Pediatric Palliative Care: Where Are We Now?

Tina M. Schwartz; Stephanie Chalupka


Pediatr Nurs. 2019;45(5):224-230. 

In This Article

Referral to Palliative Care

The literature indicates that physicians might underutilize referral to palliative care. The primary reason for lack of referral is the significant challenge faced by practitioners in identifying children most likely to benefit from palliative care services. Many times, referrals happen late in the trajectory of illness or never happen at all. Experts suggest that early initiation of palliative care at the time of diagnosis is appropriate and has a more significant impact on providing the patient and family with the support they will need throughout the progression of the disease (Keim-Malpass, Hart, & Miller, 2013). Ultimately, referrals should be made early enough to allow specialty palliative care teams to form a relationship with the child and family. In making early referrals, palliative care specialists can support families for respite care, acute admissions, end-of-life care, and assisting with when to withdraw life-sustaining treatment (Harrop & Edwards, 2013).

PPC is becoming more prominently recognized as a priority to both policymakers and hospital staff. Prior to a change in federal legislation in 2010, PPC eligibility and coverage was determined using the same regulations for hospice care for adult patients. This meant that disease-related treatments were not covered, and reimbursement was only for the last 6 months of life. In 2010, under the Affordable Care Act, concurrent care was allowed (cure-related and palliative) for children until the age of 21 (De Clercq, Rost, Pacurari, Elger, & Wangmo, 2017). However, the system is fragmented, and therefore, all providers who care for pediatric patients must advocate for concurrent care to ensure its implementation on a case by case basis (Keim-Malpass et al., 2013).

Mindy McHardy, the mother of a child with an undiagnosed condition that affected several systems, including his airway, succinctly described the benefits of early referral to PPC and her relationship with the PPC team (Vadeboncoeur & McHardy, 2018). According to McHardy, the primary team caring for her son Connor was reluctant to refer him to the palliative care team. However, during one of Connor's apneic episodes, a call was placed to the palliative care doctor on service. She gave Connor morphine to help relax his breathing, and Mindy finally felt as though someone was doing something to help them.

Ms. McHardy goes on to indicate that she found her answers in PPC and not in primary care or the acute care system, whom she praised for their abilities, but who failed to support, treat, or prevent the Connor's episodes (Vadeboncoeur & McHardy, 2018). It was the palliative care team that was able to focus on what the family and Connor needed. She describes a relationship of trust and mutual respect built with the PPC team, and as a result, difficult and forthright conversations became possible. At the end of life, the palliative care team was able to help the family make the difficult decision to withdraw care and allow their son to die without further invasive interventions (Vadeboncoeur & McHardy, 2018).