February 15, 2021
Anna Hurlbut holds Ella, the teddy bear named for her twin sister who passed away in 2015 at just 7 weeks old. Anna and Ella’s mom, Katie, has partnered with the Palliative Care team on a new program that connects bereaved parents to trained mentors who have also experienced the loss of a child.

The first year after losing her 7-week-old daughter, Ella Grace, Katie Hurlbut felt especially isolated and alone.

Ella’s surviving twin sister was home from Texas Children’s Newborn Center, but still considered high-risk and required special care. Tending to her needs while also processing the grief of Ella’s passing was overwhelming.

“My main hope was to find a purpose for the pain that I was going through,” said Hurlbut, a nurse practitioner at Texas Children’s Pediatrics Humble-Atascocita. “What helped me most was helping other bereaved families. That’s how I could move forward.”

Intent on bringing something positive out of their experience, Hurlbut looked for opportunities to connect with Texas Children’s parents and families facing similar situations. For her first project, she raised funds to establish The Butterfly Room in the NICU at the Pavilion for Women – a private space, outfitted like a nursery, for bereaved families to say goodbye to their babies.

Three years later, Hurlbut and the Palliative Care team have now launched the Bereaved Parent Mentor Program to provide another source of comfort and support for families mourning unimaginable loss.

“No parent should ever have to walk through grief alone,” Hurlbut said. “We want them to know it is possible to survive a loss like this. Your life can go on, and it can be something that has purpose and meaning.”

Bringing the program to life

Several times after The Butterfly Room opened, Hurlbut found herself speaking with heartbroken parents whose babies were nearing end of life. She realized how much she would have appreciated having another bereaved parent to talk to during that first harrowing year of grieving Ella, and resolved to bring the idea of a mentor program to NICU leaders.

Taryn Schuelke, who had taken on the role of Grief and Bereavement Specialist in 2016, became Hurlbut’s partner in the effort. She believed the Bereaved Parent Mentor Program would be a perfect fit for the goals of the Palliative Care Service, and was thrilled her leaders immediately acknowledged the need and pledged support.

“It’s such a sacred experience to work with these families,” Schuelke said. “When they leave the hospital without their children, it’s a devastating shock. This is a very tender and delicate time for them; they’re lost and overwhelmed. This mentor program truly provides a service that is necessary. It bridges the gap and helps tie families back into their community.”

With guidance from experts at St. Jude’s Children’s Research Hospital, Hurlbut and Schuelke designed a mentor program for Texas Children’s that draws volunteers from the Palliative Care Family Advisory Council. Mentors complete extensive training to prepare for the different situations and perspectives they may encounter.

Prospective mentees are identified and screened, then matched with a mentor who initiates contact within 24-48 hours. Mentors and mentees are paired for a 15-month period and expected to talk at least once a month during that time, when birthdays, holidays and other family milestones can be hardest to endure. Every interaction is documented.

“The most important thing for them is, ‘Will I ever get over this? Will I ever be normal again?’” Hurlbut said. “It’s about having that partnership with someone else who has walked that road before you and can tell you what you’re feeling is normal and it gets different with time.”

Achieving positive outcomes

Though still in its early stages, the Bereaved Mentor Program has already produced positive outcomes for Texas Children’s families. Hurlbut and Schuelke hope to see the program expand beyond the Palliative Care team someday to support other families in need.

“It’s hearing those families stories, knowing they felt so alone and seeing them take that next breath, live their next day,” Schuelke said. “To hear the relief in their voice when I say we have a mentorship program, that they have someone to turn to, that they won’t feel strange or wrong for talking about this. It’s helping them find comfort in this space.”

Hurlbut also takes added comfort in knowing the program is rooted in Ella’s memory.

“Every bereaved parent wants their child to have some type of legacy. You want to make sure they’re never forgotten,” she said. “Everything that we’ve done through Texas Children’s has brought me peace in knowing that Ella’s legacy is going to live on.”

July 27, 2020

So many teams at Texas Children’s have stepped up in remarkable ways since the COVID-19 pandemic began. The Section of Palliative Care (Pediatric Advanced Care Team) is no different. In fact, this often unsung group has proven its value like never before as families desire more connection, enhanced communication and extended conversation.

The multidisciplinary team of 23 serves Medical Center Campus, West Campus and The Woodlands hospitals.

“We provide an extra layer of support for families and patients who are going through an illness,” said Claire Crawford, palliative care social worker. “We help with non-verbal expressions of compassion in the absence of touch, which has been in exceptionally high demand since the pandemic began.”

Crawford adds that with new visitation guidelines, parents are often alone when they receive news that’s hard to hear. Therefore, there is a need for even more support. “On top of that, our nurses and doctors are often delivering this news while wearing masks, goggles and other protective equipment so it is even more challenging for them to convey their empathy. This is where we come in.”

Crawford says the team can consult with other health care workers to ensure that dialogue with families is compassionate and connective.

In addition, the goals of the department are to:

  • Provide emotional support for children and families
  • Provide support for difficult hospitalizations
  • Manage distressing symptoms
  • Engage social work resources
  • Help families make difficult decisions
  • Refer to supportive therapies (psychology, music therapy, art therapy, and Pawsitive Play) for patients
  • Enhance quality of life
  • Utilize integrative medicine techniques
Doesn’t palliative care mean “end of life?”

One of the department’s main goals is to educate our patient population on their role and to debunk the myth that palliative care always means that a child may die. “It is true that our services in an adult setting often do mean that the end of life is near, but that is far less the case in a pediatric setting,” said Crawford. “Of course, there are times when we do need do have those discussions, but we are working hard to make sure that when parents hear our name they don’t automatically assume the worst.”

A Texas Children’s dream team

This all-star team is led by Dr. Tammy Kang, section chief of Palliative Care and consists of palliative care specialists, including:

  • Doctors
  • Nurses and nurse practitioners
  • Social workers
  • Chaplain
  • Grief and bereavement specialist
  • Administrators
  • Psychologist
  • Researchers

Crawford said the success of the team is built on respect for one another, friendship and an unyielding dedication to provide the best care to patients.

December 16, 2019

About 900 people packed into the auditorium at the University of Houston’s Student Center South on the evening of December 8 to attend Texas Children’s Second Annual Candle Lighting Ceremony, which remembers, honors, mourns and celebrates the lives of children gone from this world too soon.

Hosted by Texas Children’s Palliative Care Team (PACT), the ceremony was held in conjunction with the Compassionate Friends Worldwide Candle Lighting Day, which unites family and friends around the globe in lighting candles for one hour at 7 p.m. on the second Sunday in December in memory of children who have passed away. All families whose children died and were patients at Texas Children’s Hospital were invited to attend.

Prior to the event, the 700 plus family members shared a meal while the 60 plus children played in designated childcare rooms. During the ceremony, a slide show of those lost gave faces and names to those who have died, as did a display of paper hearts hung on trees at the front of the auditorium. Attendees were encouraged to write their child’s name on the hearts. Texas Children’s Vice President of Nursing Heather Cherry welcomed attendees and Jan Wheeler, a parent with Project Joy & Hope, shared an honest and encouraging reflection of her experience losing a child. Toward the end of the ceremony, five candles were lit at the front of the room – one for grief, another for courage and the rest for memories, love and hope.

Taryn Schuelke, the grief and bereavement specialist with the Palliative Care team and ceremony chair, said she is pleased so many families attended second annual candle lighting.

“We are honored to have known these children and to be able to honor them. It means the world to the families that we remember their children,” she said. “We also are thankful to have so many people who are willing to help make such a special remembrance happen.”

Some of those people and organizations include:

  • The Aleksandra Petra Mondlak Palliative Care Endowed Fund
  • Texas Children’s Palliative Care Community and Psychosocial Services Endowed Fund
  • Donor families and businesses
  • Texas Medical Center Orchestra
  • Texas Children’s Art Therapist Ashley Wood created the art used on all ceremony branding and the mural displaying the previous year’s paper hearts
  • The Palliative Care Team’s Senior Administrative Assistant Lindsey Gurganious built the ceremony mantle and poured the large ceremony candle.
  • Texas Children’s Spiritual Care Department
  • The tea light display built by Chris Jones, husband of the Palliative Care Team’s Administrative Assistant Heather Jones.
  • Texas Children’s music therapy volunteer Danh Nguyen who played guitar and lead the ceremony in song
  • Several volunteers from the Volunteer Services Department
  • Various local restaurants and florists
  • More than 100 Texas Children’s Hospital staff volunteers and their families

The Pediatric Advanced Care Team (PACT) is an interdisciplinary team comprised of attending physicians, physicians in training, advanced practice nurses, a nurse, chaplain, social worker, grief and bereavement specialist, research coordinator and administrators who work together to provide excellent palliative care to patients and their families across the Texas Children’s Institution.

The team is available 24 hours a day, 365 days a year to provide care in either the inpatient or outpatient setting in partnership with other health care providers. The team also supports staff. Just last year, the program earned The Joint Commission’s Gold Seal of Approval for Palliative Care Certification, making Texas Children’s Palliative Care Program the first of its kind in Houston and one of only 90 across the United States to receive such a distinction. To learn more about the team, click here.

July 1, 2019

Last year, Texas Children’s Palliative Care Program celebrated being awarded The Joint Commission’s Gold Seal of Approval for Palliative Care Certification. Texas Children’s Palliative Care Program is one out of ninety programs across the country to receive this distinction. Learn more by visiting our 2018 virtual Annual Report.

December 18, 2018

Standing in a packed auditorium at the University of Houston’s Student Center South on the evening of December 9, Natalie Martinez gripped a white candle and whispered Angelina when the person seated next to her lit her wick. Angelina is Natalie’s 11-month-old daughter who died five years ago of an undiagnosed medical condition.

“I have been looking for a way to formally honor my little girl and this is it,” Natalie said. “I had to bring a friend for support because I might break down, but I’m here and I’m thankful to have such an opportunity.”

Natalie was one of about 700 people who attended Texas Children’s First Annual Candle Lighting Ceremony to remember, honor, mourn and celebrate the lives of children taken from this world too soon. Hosted by Texas Children’s Palliative Care Team (PACT), the first annual Candle Lighting Ceremony was held in conjunction with the Compassionate Friends Worldwide Candle Lighting Day, which unites family and friends around the globe in lighting candles for one hour at 7 p.m. on December 9 in memory of children who have passed away. All families whose children died and were patients at Texas Children’s Hospital were invited to attend the ceremony, which included free parking, refreshments, childcare and access to grief resources.

Dr. Tammy Kang, section chief of Palliative Care at Texas Children’s, and Jackie Ward, associate chief nursing officer, kicked off the ceremony with words of encouragement and hope.

“Together we come together in unity to honor those lost,” Ward said. “We will forever remember them, cherish them and their imprint on this world.”

Kang agreed and said she hoped the ceremony would provide a healthy outlet of remembrance for families grieving the loss of their child, and to begin to heal from the pain and sadness they are going through.

A slide show of those lost brought many people to tears, giving faces and names to those who have died, as did a display of paper hearts hung on trees at the front of the auditorium. Attendees were given the option to write a message to their child on the hearts. Natalie’s heart read: Some people dream of angels. I’ve held one in my arms.

During the ceremony, five candles were lit at the front of the room – one for grief, another for courage and the rest for memories, love and hope. Then, the candles of everyone in the audience were lit as music therapists Alix Brickley and Abi Carlton sang This Little Light of Mine.

“Take a deep breath,” Chaplain James Denham said soothingly. “You are not alone.”

Melissa Lopez, a nurse in the Cancer Center, was both a volunteer and an event participant as her 16-year-old daughter, Natalia, passed away nine years ago after fighting her battle against cancer.

“Texas Children’s needed this type of event,” she said. “People like me need to know and feel like our children have not been forgotten.”

Taryn Schuelke, the grief and bereavement specialist with the Palliative Care team and ceremony chair, said she is pleased so many people attended the first of what will be an annual ceremony for those tied to Texas Children’s who have lost a child.

“We are honored to have known these children and to be able to recognize them,” she said. “We also are thankful to have so many people who are willing to help make such a special remembrance happen.”

Some of those people and organizations include:

  • The Aleksandra Petra Mondlak Palliative Care Endowed Fund
  • Texas Medical Center Orchestra
  • Texas Children’s Hospital Language Services
  • Texas Children’s Art Therapist Ashley Wood created the art used on all ceremony branding and will turn the paper hearts into a display for next year’s ceremony.
  • The Palliative Care Team’s Senior Administrative Assistant Lindsey Gurganious built the ceremony mantle and poured the large ceremony candle.
  • Texas Children’s Spiritual Care Department
  • Texas Children’s music therapists
  • More than 100 Texas Children’s Hospital staff and their families
  • Various local restaurants and florists

The Pediatric Advanced Care Team (PACT) is an interdisciplinary team comprised of attending physicians, physicians in training, advanced practice nurses, a nurse, chaplain, social worker, grief and bereavement specialist, research coordinator and administrators who work together to provide excellent palliative care to patients and their families across the Texas Children’s Institution.

The team is available 24 hours a day, 365 days a year to provide care in either the inpatient or outpatient setting in partnership with other health care providers. The team also supports staff. Just last year, the program earned The Joint Commission’s Gold Seal of Approval for Palliative Care Certification, making Texas Children’s Palliative Care Program the first of its kind in Houston and one of only 90 across the United States to receive such a distinction. To learn more about the team, click here.

October 23, 2018

Texas Children’s Palliative Care Team (PACT) will host the first annual Candle Lighting Ceremony to honor the memories of sons, daughters, brothers, sisters and grandchildren gone too soon from this world.

The event will be held at the University of Houston’s Student Center South on Sunday, December 9, in conjunction with the Compassionate Friends Worldwide Candle Lighting Day, which unites family and friends around the globe in lighting candles for one hour at 7 p.m. in memory of children who have passed away.

All families whose children died and were patients at Texas Children’s Hospital are invited to attend the ceremony. There will be free parking, refreshments and childcare (for event attendees only, not for volunteers and staff working the event) for children 10 and under.

Families whose children passed away in the past three years received an invitation in the mail. There is also a Facebook event to invite families whose children passed away prior to 2016. Please share the Facebook event to spread the word. We want as many families to hear about the ceremony as possible. You can find the event on Facebook here or by searching “Texas Children’s Annual Candle Lighting Ceremony 2018.” Families must register to attend the event. To do so, they can go here.

Texas Children’s staff are needed to help plan the ceremony and volunteer to help the day of the event. If you are interested in volunteering, please click here.

“Losing a child is devastating and takes a toll on the whole family,” said Taryn Schuelke, the grief and bereavement specialist with the Palliative Care team. “We hope this ceremony will provide a healthy outlet of remembrance for families grieving the loss of their child, and to begin to heal from the pain and sadness they are going through.”

The Pediatric Advanced Care Team (PACT) is an interdisciplinary team comprised of Attending Physicians, Physicians in Training, a Nurse, Chaplain, Social Worker, Grief and Bereavement Specialist, Nurse Practitioner, Research Coordinator and Administrators who work together to provide excellent Palliative Care to patients and their families across the Texas Children’s Institution.

The team is available 24 hours a day, 365 days a year to provide care in either the inpatient or outpatient setting in partnership with other healthcare providers. The team also supports staff. Just last year, the program earned The Joint Commission’s Gold Seal of Approval for Palliative Care Certification, making Texas Children’s Palliative Care Program the first of its kind in Houston and one of only 90 across the United States to receive such a distinction. To learn more about the team, click here.

December 5, 2017

On November 21, Texas Children’s earned The Joint Commission’s Gold Seal of Approval for Palliative Care Certification, making Texas Children’s Palliative Care Program the first of its kind in Houston and one of only 90 across the United States to receive such a distinction.

The certification demonstrates Texas Children’s focus on achieving optimum care for patients with serious illnesses and is a symbol of quality that reflects an organization’s commitment to providing safe and effective patient care.

The Palliative Care team recently underwent a rigorous onsite review during which Joint Commission experts evaluated compliance with national palliative care standards built on the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care and the National Quality Forum’s National Framework and Preferred Practices for Palliative and Hospice Quality Care.

“Texas Children’s has demonstrated its commitment to serve patients diagnosed with a critical and debilitating illness in a safe, high quality and patient-focused environment,” said Patrick Phelan, executive director, Hospital Business Development, The Joint Commission. “We recognize and commend Texas Children’s for its efforts to provide palliative care services while emphasizing patients’ physical, emotional and spiritual needs as they make end-of-life decisions.”

Established in 2011, The Joint Commission’s Palliative Care Certification is awarded for a two-year period and recognizes organizations that demonstrate exceptional patient and family-centered care in order to optimize the quality of life for patients with serious illnesses.

“Texas Children’s is pleased to receive certification from The Joint Commission, the premier health care quality improvement and accrediting body in the nation,” said Dr. Tammy Kang, section chief of Palliative Care at Texas Children’s. “The certification recognizes hospital inpatient programs and helps to further promote and advance the field of palliative care, ultimately improving the care for persons living with serious illnesses.”

Helping parents verbalize their challenges and focus on what they want to accomplish with their seriously ill child are among the goals of the system-wide Palliative Care program at Texas Children’s Hospital.

“What we have tried to promote is the understanding that palliative care is about maximizing quality of life, and improving care and support for children and families with serious illness, regardless of prognosis,” said Kang, who holds a clinical epidemiology degree and was recruited from the prestigious Children’s Hospital of Philadelphia, where she started a palliative care team and managed it for the past 15 years. She launched the clinical service at Texas Children’s in October 2016.

Clearing up misunderstanding

“Many people have the misunderstanding that palliative care is hospice care or end-of-life care,” Kang said. “We certainly partner with hospice agencies in the community to provide those kinds of services, if that’s what the patient is facing and that’s the family’s choice. But the vast majority of children served by pediatric palliative care providers are not in hospice care and are not terminal. Instead, these are children with complex, serious illness who require additional support and services for managing distressing symptoms. It’s for helping families understand the medical processes and interventions, for providing psychosocial, spiritual and emotional support for patients, their families and their siblings. And it’s just helping families navigate this very complicated health care system.”

To provide that support takes an interdisciplinary team of physicians, nurses, social workers, child life specialists, chaplains and other support specialists.

“Many of the kids have issues with multiple organ systems, where they have 20 or 30 medical problems” said Dr. Daniel Mahoney, a palliative care physician. Sometimes the course of treatment, such as chemotherapy or bone marrow transplants, may cause problems in the heart or kidneys. A problem in the genetic code can affect every organ system in the body – the brain, heart, lungs, kidneys and liver.

“Often kids have multiple specialists who try to coordinate care,” Mahoney said.

Long-term attitude

Although the formal, system-wide Palliative Care program is somewhat new at Texas Children’s, individual palliative care programs existed in several service lines. And, of course, working as a team to provide the best care for very sick children is not a new concept at Texas Children’s.

A landmark report published in 2000 by the Institute of Medicine, When Children Die: Improving Palliative and End of Life Care for Children and Their Families, stimulated work across the country to improve palliative care programs for children.

In the years since then, Texas Children’s has:

  • Taught twice a year the End-of-Life Nursing Curriculum, developed from a national Robert Wood Johnson Foundation project;
  • Started a perinatal palliative care service for pregnant women facing difficult fetal diagnoses;
  • Supported clinicians to attend the Palliative Care and Practice Educational course at Harvard and a retreat presented by the Initiative for Pediatric Palliative Care;
  • Started a palliative care service for Texas Children’s Cancer and Hematology Center patients.

Under the leadership of Physician-In-Chief Dr. Mark W. Kline, and with the efforts of Dr. Susan Blaney, deputy director of the Texas Children’s Cancer and Hematology Centers, and representatives with Ethics and Palliative Care at Texas Children’s, the organizational umbrella opened in 2016 with support from Texas Children’s Hospital and Baylor Department of Pediatrics.

Texas Children’s Information Services team also was instrumental, partnering with Epic Production Support to create the necessary tools to improve the care of their patients. This collaboration included the development of a customized navigator, note templates, and letters. These improvements also provided the “Pink Sheet” in an electronic format. The pink sheet, which was previously only available in a paper format, ensures that this patient population is cared for in accordance to county and state regulations. As an added benefit, the new electronic form will streamline workflow by making it easier to identify required documentation. Automation of documentation lets our Palliative Care Team have more time to provide more family centered care.

“One of the things that already existed here is this commitment from the leadership on down to the clinical providers to really provide the best possible care for every patient, for every family, regardless of where they came from, what their diagnosis was, or their prognosis,” Kang said. “What also exists here is this great collaborative energy between the medical teams, the department, the hospital and the hospital administration that’s needed for our integrated way of caring for children.”

The Palliative Care team sees patients across the hospital and its many clinics. In its first year of clinical operation, the team provided more than 435 consults and 1,800 follow-up visits.

“We’ve heard from families that they really appreciate this consultant team helping them identify the goals of care,” said Joy Hesselgrave, a longtime nursing staff member in Hematology-Oncology, who is now assistant clinical director of Palliative Care. “The team listens to what the family thinks they want for their child, listens to the clinical medical team who manages the medical care and who says what’s possible, and then communicates that to the family in a way that helps with their decision-making process.

“I think a lot of families have ideas about what they think, but they haven’t articulated them. They haven’t made any plans or contingencies. Just offering them a space in which to communicate and to clarify is very helpful. It’s not high tech, but high touch is really important.”

Available 24 hours a day

It may not be clear in the first visit how the team can be helpful, but it becomes clear as they get to know the family and build a long-term relationship. The team provides a cell phone number to parents, staff and referring physicians for a phone that is answered 24 hours a day, seven days a week by a physician from the team.

One of the team’s goals is a home visit program, in which psychosocial providers can go to the homes to check on patients, as well as provide support for caregivers and siblings.

“We know that siblings of children with serious illness are at risk for increased health issues, increased learning issues, and increased behavioral and psychological issues,” Kang said. “These children are often going through a lot of difficulties because their parents are at the hospital, and there is a lot of emotional and financial stress in the household. Being able to provide some support for these children in the home is a future goal.”

While physician visits are billed as medical visits, families are not billed for any of the other services.

“We really rely upon philanthropy to allow us to think about how to grow and to provide the best care and the best support both in the hospital and in the community,” Kang said. “I perceive our outcomes as being successful if we are doing our very best for every patient and every family that walks through the door.”

Significant support for staff

In addition to caring for patients and families, the team helps support staff.

“We didn’t really anticipate support for staff as being so significant,” Hesselgrave said. “To take care of and be the witness and the caregiver for children who are very sick or dying is very emotionally, physically and mentally exhausting. It’s very helpful to have members of our team there walking the journey with them.”

Besides emotionally supporting the staff, the team provides education about palliative care to staff at Main Campus, The Woodlands and West Campus. The program received Accreditation Council for Graduate Medical Education accreditation for a fellowship program in pediatric hospice and palliative medicine in 2016 and is training its first fellow. Beginning next year, the team will be able to train two fellows per year. They anticipate broadening their reach within the hospital and to community physicians and home care providers, educating them on the benefits of palliative care.

“We are committed to developing a research and outcomes platform as well,” Kang said. “We are well poised at Texas Children’s, because it is the largest academic pediatric program in the country, to help move the palliative care field forward through actively engaging in educational and research opportunities. A number of researchers across this institution right now have research interests relevant to palliative care, where I think important questions could be answered here relatively quickly.”

Putting its large, diverse patient population to good use for research, Texas Children’s is a member of the Pediatric Palliative Care Research Network, a research group of children’s hospitals in the U.S. and Canada.

In the complex world of medicine, the Palliative Care team leads families and staff through the thicket today and uses research to clear the way for tomorrow.