Terminally Ill Pediatric Patients Need Greater Access to Advance Care Planning

As awareness and acceptance of advance care planning gains ground among health care providers and the general public, children with life-limiting illnesses are sometimes left behind.

Some stakeholders have sought to improve access to advance care planning for pediatric patients. Among them is the American Academy of Pediatrics (AAP), which recently released a set of guidelines to support those discussions.

Engaging in goals of care discussions can help families address emotional and clinical crises before they occur, while also providing a better understanding of their child’s prognosis and care options, according to the guideline authors Dr. Jennifer Linebarger, Victoria Johnson, and Dr. Renee Boss of the AAP’s Section on Hospice and Palliative Medicine.

“Early advance care planning is beneficial, and the final days and weeks of life offer additional opportunities for shared decision making and revisiting goals of care,” the authors wrote in the guidelines. “Collaboration with pediatric palliative care and hospice resources can support families and staff during pediatric end-of-life care.”

These discussions are challenging for both clinicians and the patients and families receiving care. This can be even more difficult when it comes to pediatric patients.

Hospice and palliative care providers face unique challenges when working with children, according to Nadine Lusney, clinical nurse specialist at Canada-based Canuck Place Children’s Hospice in Vancouver, British Columbia.

In some cases, they are caring for children too young to express their wishes. Terminally ill pediatric patients also often have rare diseases, which further complicates prognostication.

Communication and coordination becomes paramount when collaborating with parents as surrogate decision-makers interacting with multiple health care providers and teams.

Reticence among other pediatric clinicians to discuss the end-of-life — or limited understanding of hospice and palliative care — can also create a barrier between patients and the care they need, according to Lusney.

“These conversations are iterative and happen over time, so they might be a particular focus of one component over others in some discussions depending on the fragility and stability of the child,” Lusney told Hospice News. “Clinicians often worry about timing, but it is far more detrimental not to have these conversations than to wait for the ‘perfect’ time.”

Misconceptions about the nature of hospice and palliative care are common among many families of seriously ill children. Many among the public — and some clinicians — conflate the two as the same end-of-life care. This can also slow or impede a child’s access to those services.

Building a partnership with the pediatric providers that precede hospice can be key to engaging families earlier to address goals of care.

Seriously ill children represent less than 10% of the U.S. population but account for at least 50% of hospital resources for youth patients, according to AAP research. Primary care or subspecialty providers make up the bulk of the clinicians who care for them.

But these professionals often lack the specialized skill sets to conduct end-of-life care discussions. Many could benefit from coordinating with a palliative care team, local hospice or private duty nursing agency, the AAP guidelines indicated.

Education is essential to improving these conversations, as well as access to care, according to Lusney. To be effective, providers need to really understand the child and family’s wishes, goals, hopes and what they value most in terms of quality of life, Lunsey told Hospice News.

“[These] communications skills are difficult skills to teach and often training or mentoring to support growth is limited,” said Lusney. “Pediatric advance care planning also involves the concept of parallel planning. Parallel planning is the planning of both the life of the child while also planning for deterioration or death to really allow a child to reach its full potential for the length of their life.”

Talking to families about their options involves providers coming together and speaking the same language when it comes to advance care planning, according to Kristin James, executive director of the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC).

It’s particularly important that families understand the option for concurrent care alongside hospice and palliative, and the supportive role an interdisciplinary team can provide, said James.

“It goes back to the language of our profession and how we talk about supportive care,” James told Hospice News at the Palliative Care Conference in Chicago. “[Families] are not losing, they’re not giving up, they’re gaining a specialized team that understands pain and symptom management, goals of care and supportive needs. It’s using that language.”

Shared decision making at the end of a child’s life requires attention to cultural and community norms, religious beliefs, impact on siblings and extended family, and inclusion of the youth patient, they both stated.

Some key issues that need to be addressed include the availability of concurrent curative care, plans for when other treatments become too burdensome, and where the patient chooses to die.

While many adults wish to die at home, some youths and their families may elect to be in a hospital or facility setting at the end of life for a variety of reasons, including concerns about managing pain and symptoms, the AAP guidelines stated.

Talking patients and families through these decisions requires a different approach than one would take with adults, according to Sara Dado, senior director of clinical programs for Illinois-based Lightways Hospice and Serious Illness Care.

“It’s going to be a different conversation than in the adult hospice world,” Dado told Hospice News at the Palliative Care Conference. “We have to come at it with a different approach and perspective. That’s why training and education is so important.”