Bethany and Jonathan Chu never wanted Le Bonheur Children's palliative care team to visit their twin daughters’ hospital room.
The Chus, whose daughters, Penny and Lydia, were born three months premature, were terrified every time they saw the palliative care team walking the halls. Bethany and Jonathan said the team “felt like the angels of death.”
“My first impression was, ‘I hope they never come and see me,’” Bethany said.
But those fears quickly subsided after a consultation with Palliative Care Medical Director Melody J. Cunningham, MD. The Chus benefitted from Le Bonheur’s growing program, called Threads of Care, which helps guide families through their child’s extended hospital stays by providing specialized medical care for those with chronic or complex illnesses, giving guidance and advice and planning long-term care and support.
Bethany and Jonathan sought support and advice from Threads of Care until both their daughters were finally home and “graduated” from the program. Lydia was hospitalized for two months because her underdeveloped lungs made it difficult for her to breath. Penny was in the NICU for 10 months and was fitted with a ventilator, a G-tube and was under 24-hour nursing care. The Memphis couple credits Le Bonheur’s palliative care program with guiding them through their daughters’ extensive hospital stays.
“For the team to come in and guide us through this was the difference between a terrible memory to a really treasured time where we were able to make the best decision for our children,” Bethany said.
In less than a decade, Le Bonheur’s Threads of Care program continues to expand its program and continue its goal of helping children like Penny and Lydia who are living with life-threatening or chronic illnesses.
Nationally, the number of palliative care programs continues to grow. According to a study by the Center to Advance Palliative Care, 67 percent of hospitals with 50 or more beds have a palliative care program.
As of 2014, the latest numbers, 400 hospitals have registered with the National Palliative Care Registry but only 1.3 percent focus solely on pediatric patients. Launched in 2005, Le Bonheur Children’s is one of only three pediatric palliative care programs in Tennessee. The team sees patients in the hospital, clinics and homes in order to try and “stitch the pieces of care together,” Cunningham said.
Since its inception, the Threads of Care team has seen substantial growth in the number of patients they see each year. Cunningham said the team counseled approximately 250 children and their families in 2015, and in 2016, the team’s on pace to see about 350.
While Threads of Care has seen steady growth in the last 10 years, Cunningham said pediatric palliative care is often misunderstood among families and physicians, with many believing her field of medicine only deals with the death of a child.
“The most common myth is that we only take care of patients at the end of their life and we’re the equivalent of hospice, and that’s definitely not true,” Cunningham said. “We follow many of our patients for years.”
Although the team does handle end-of-life decisions with families, the team’s primary goal is to provide medical advice and support, said Threads of Life program coordinator Joanna A. Lyman, MA, CCLS. The Threads of Care team also aims to help coordinate a cohesive line of communication between Le Bonheur doctors, patients and their families.
“We’re often asked to help (families) think through very difficult medical decisions and to be a sounding board for them as they are considering their options,” Lyman said. “Very often we’re an extra layer of support for a family that’s walking a very difficult road and who needs additional support, ideas and comforts.
Providing that extra layer of support has been a comfort for Memphis residents Angela and Radale Pearson, whose son, Eric, has been in Le Bonheur’s NICU for more than a year. Born at only 27 weeks, Eric weighed only 1 pound 1 ounce at birth and suffers from chronic lung disease, pulmonary hypertension and pulmonary vein stenosis.
The Threads of Care team helped Angela and Radale understand and cope with their son’s complicated medical conditions. Although Eric has graduated from Le Bonheur’s NICU and remains in the hospital, the Pearsons said the Threads of Care team has provided the couple with hope that one day their son will go home.
When a child leaves Le Bonheur the Threads of Care staff remains in contact with families. A team member calls families two and seven days after discharge for brief checkups and provides parents with a list of phone numbers to use for concerns. In addition, Palliative Care makes home visits when necessary and sees patients in subspecialty follow-up clinic appointments.
If a child dies, the team will remain in contact for two years, and families are invited back to Le Bonheur for consultations to discuss any questions they have and to meet with their child’s medical team.
“Almost all the families want to come back for clarity. They want their questions answered.” Cunningham said. “There are some who don’t want to come back for a medical conference but they want to simply come back on the anniversary of the loss of their child so they can remember their child with us.”
Building and maintaining a relationship with families is vital to the program’s success, Lyman said, as is having an open line of communication between physicians, Threads of Care team members and their patients.
And that communication and support provided by the Threads of Care team is what Angela and Radale Pearson rely on. Both said Eric’s care at Le Bonheur has helped the 1-year-old to a better quality of life, and after extensive physical therapy, he’s learning to sit up and is slowly growing stronger.
“I don’t think my child would be to the point where we can talk about going home with him without Threads of Care,” Angela said. “We needed a team to hear our side of the story and palliative care was the glue that stuck it all together and made the puzzle complete.”
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