palliative care – Inside Pediatrics

Expanding palliative care for cancer patients

Children’s is working to improve and expand palliative care for heart disease and cancer patients. (Stock photo)

Two patient deaths sadly stood out to Children’s of Alabama pediatric oncologist Emily Johnston, M.D, MS., when she was a pediatrics resident. Both were examples of how systemic and communication issues could thwart the goal of providing gravely ill children with the best death possible. Both fueled Johnston’s career trajectory.

In the six years since she joined Children’s, Johnston—also an assistant professor of pediatric hematology-oncology and a member of the Institute for Cancer Outcomes and Survivorship at University of Alabama at Birmingham (UAB)—has led efforts to significantly expand pediatric palliative care to more young patients. Before her tenure, only 23% of children dying of advanced heart disease and 58% of children dying of cancer at Children’s received palliative care, but she and colleagues have boosted those numbers by creating standard referral criteria for certain high-risk patients so they can get palliative care starting at diagnosis.

“Unfortunately, kids are dying whether I’m part of the process or not,” Johnston said. “But I’d like to make that better, and it’s really an honor to be with patients and families during the journey and learn from their incredible experiences.”

While pediatric palliative care is becoming better recognized, much variation still exists in how pediatric hospitals tend to view the subspecialty. Additionally, some pediatric specialists feel they don’t need help from pediatric palliative care, “not recognizing that it also offers symptom, spiritual and psychosocial support,” Johnston said.

“Providers get really anxious about introducing palliative care to families, thinking it’s going to take away from a family’s hope or impact their relationship with the patient,” she added. “But families, on the other hand, say it actually helps them with hope and that they wish they knew more about what palliative care does.”

Johnston’s research is helping to define quality end-of-life care and disparities around poverty, race, ethnicity and other factors that could potentially lead to targeted interventions. The biggest barrier she has faced centers around conducting bereaved parent research.

“We still face regulations from IRBs (institutional review boards) and funders that get really nervous that we’re causing harm by doing research, but data show parents want to participate and that it’s beneficial,” she said. “They have so much wisdom to offer, and the vast majority want to share their stories and improve end-of-life care for future children.”

By spearheading efforts to expand palliative care at Children’s, Johnston has won over many oncology providers who appreciate the additional support in caring for a patient population fraught with emotional and practical challenges. The process has also increased palliative care skills among oncology team members across all career levels at Children’s and UAB.

“We’ve learned a lot in the past 10 years about the best ways to have difficult conversations,” she said. “It’s not just younger attending physicians who have benefited from some of the learning about how to give difficult news in an evidence-based way.”

Ultimately, Johnston feels the efforts set Children’s and UAB apart from many other pediatric institutions across the country—most of which can’t represent patients from the South, many of whom are Black and live in rural areas. “I think we’re setting ourselves up as a leader in pediatric palliative care research,” she said.

January 9, 2025 by childrensal

Hematology and Oncology

Improving End-of-Life Care for Pediatric Cancer Patients

Dr. Emily Johnston is a pediatric oncologist at Children’s of Alabama.

Almost 3,000 children die from cancer each year in the United States. But in pediatrics, unlike adult care, there are no quality measures for end-of-life care. That’s changing, however, thanks to the pioneering work of Children’s of Alabama pediatric oncologist Emily Johnston, M.D., M.S.

“My goal is to establish quality measures for end-of-life care for children with cancer and then leverage those quality measures to reduce disparities in care,” Johnston said.

The mission comes from her time as a fellow, when she saw many deaths that did not go the way she believes patient families would have wanted. Systemic issues, like the inability to get a child into hospice given the lack of pediatric hospices, presented significant barriers.

In researching pediatric end-of-life issues, she found significant variation in care for underrepresented minorities. For instance, Hispanic children with cancer are more likely than non-Hispanic white children to die in the hospital and have medically intense end-of-life care. “When I would say this to people, they would tell me, ‘It’s okay, it’s what they want,’” Johnston said. But through dozens of interviews with bereaved parents, she found that was not the case.

During one series of interviews with 28 parents of 24 children who died of cancer, most parents said they preferred a home death and did not want their child dying in the restrictive environment of the intensive care unit (ICU). While they wanted their children to die peacefully, parents didn’t want to stop cancer treatment. They also told interviewers that they needed more education around end-of-life issues and more support around non-medical issues, such as financial challenges, so they could focus on their child. Parents also talked about a sense of abandonment after their child died.

Johnston and her colleagues then brought together a panel of nine experts in pediatric oncology, including representatives from nursing, social work and palliative care, to develop quality measures for end-of-life care for children with cancer, much like those available for adults. The 16 measures fit into four categories:

Avoiding medically intense end-of-life care
The location of death
Hospital policies/programs
Supportive care

For instance, one indicator measures the proportion of children who were intubated during the last 14 days of life, given that intubation usually increases suffering. Another measures the proportion of children who received palliative care or hospice support in the last month of life since both offer an additional layer of support for families, help alleviate suffering and facilitate the identification of the goals of the family and child.

Hospital policies designed to improve the patient end-of-life experience included having pediatric palliative care services and a bereavement program available and eliminating visiting-hour restrictions, including age and number of visitors. Johnston and her colleagues are now working on validating and implementing the quality measures.

But, she said, “that research is a very big-picture; it’s not going to affect care tomorrow.” So, she partnered with University of Alabama at Birmingham palliative care physician Susan Buckingham, M.D., to improve access to palliative care for patients with high-risk cancers such as some brain and solid tumors.

Today, instead of starting palliative care near the end of a child’s life (and then only if the parent or physician requests it), families meet with Buckingham at diagnosis and have access to palliative care services throughout their child’s illness. Meanwhile, Buckingham attends oncology staff meetings and is now part of the multidisciplinary team treating those patients. She can spot unmet needs early in the process and work collaboratively with the nurses, social workers and other clinicians caring for the child and family. “We’ve done interviews with 12 families who had early palliative care about their experiences, and the feedback has been really positive,” Johnston said. As one family told her, “I didn’t really understand what palliative care did until we needed it, and I was so glad I already knew them by then.”

January 16, 2023 by childrensal