Health care providers should take a more expansive view of how they care for patients and families, according to Dr. Tressia Shaw, the new division chief for palliative medicine at Phoenix Children’s Hospital.

Shaw rose to lead the Phoenix, Arizona-based hospital’s palliative care program in early October. U.S. News and World Report ranks Phoenix Children’s as the best children’s hospital in Arizona. Other publications rank the hospital in the top 50 nationally.

For Shaw, the new position is familiar: She has been instrumental in building the hospital’s childhood palliative care program for the past 20 years. Her first task at Phoenix Children’s was creating a complex care program, which quickly transitioned to creating, nurturing and building the pediatric palliative care division.

“We have a perinatal palliative care service, so we see expectant mothers, and then we go all the way up (in age),” Shaw told Palliative Care News.

Some patients in Shaw’s division qualify as young adults, receiving treatment and services into their early 20s before transitioning to adult services.

Shaw started her career as a general practice pediatrician with an interest in children with complex, multi-faceted medical needs, as well as those suffering from life-limiting medical conditions.

“(I was drawn to) walking alongside the children and their families in that journey and trying to look ahead and anticipate what needs they might have, what decisions might come down the road, managing their symptoms, really trying to improve their quality of life and make every day the best day possible,” Shaw said. “And that’s really palliative care.”

Working in hospice care as well, she began to see the benefits of having difficult conversations and making important care decisions before the patient was in hospice.

“We weren’t always working in a crisis mode,” Shaw said.

The Phoenix Children’s palliative care program was launched in 2009. It started as a program, and grew into a section and, finally, a division.

Shaw’s large staff includes eight board-certified doctors, an advanced nurse practitioner, a social worker, a mental health therapist, a bereavement coordinator, a bereavement counselor, a psychologist, a nurse coordinator and a medical assistant. There is also liaison work with the hospital chaplaincy and child life specialist. 

“Interdisciplinary care is the cornerstone of palliative care, so that’s always been something we’ve tried very hard to make sure we represent within the division,” Shaw said.

In a typical year, the division will see 800 unique patients for more than 1,000 consults, she said.

Shaw’s role in developing the palliative care program offers her a special insight to its challenges. For example, when people hear “palliative care,” their perception jumps to end-of-life care. But many of the patients in palliative care live for years; many recover altogether.

“I think trying to shift the culture to embrace all of the roles that we can play in supporting the family is something that not only our program has faced, but many programs around the country (have faced),” she said.

According to Shaw, her division employs a family-centric approach to palliative care. In addition to the needs of the ailing child, their parents, siblings and other family members may serve as caregivers. All are part of the equation when offering pediatric palliative care. 

“This is where the interdisciplinary team is very crucial in looking at what support does that family need,” Shaw said.

Shaw’s division includes both inpatient and outpatient care. Other physicians who recognize a patient’s need for palliative care often refer patients to the program. According to Shaw, the team also disseminates referral criteria to doctors who may have patients in need of palliative care.

Being one of such two programs in Arizona, Shaw sees patients from across the state.

The success of a palliative care program can be difficult to quantify. For Shaw, successful treatment involves providing the support and care a patient needs early in their illness. Treatment includes support that improves the patient’s quality of life while moving through the patient’s illness arc to reassess the patient’s needs, and shifting treatment and support as needed.

“I think the earlier we can meet them in the journey the better, because that helps us ensure that we’re meeting their needs and providing the best support possible,” she said. “If we know them before a crisis, we can often be more useful in supporting them and advocating for their goals for their child.”

In the future, Shaw would like to expand the program’s outpatient footprint. When it started in 2009, the program was strictly inpatient. That changed five or six years ago, she said, when they added an outpatient component. 

Expanding the outpatient program will allow Shaw and her team to meet patients even earlier in the treatment arc, improving the efficacy of the palliative care program. Shaw said.

Shaw said she sees pediatric palliative care as a growth sector in health care, but careful research and assessment are needed for a program to launch successfully.

“I think that if someone were to start a program, the first thing would be to meet with the stakeholders, understand your own local and regional needs, what’s available to you, and go from there, like a needs assessment and a resource evaluation,” Shaw said.