Palliative Care and Bereavement Program For nearly four decades, Phoenix Children’s Hospital has become known for its enduring drive to excel. That drive is grounded in our commitment to discovering new and innovative ways of providing our young patients with the very best that medicine has to offer.
specialized medical care for nearly 2,000 children with serious and potentially life-limiting conditions and their families. The palliative care services our team provides – coordinating services, managing symptoms, and maximizing quality of life – continue to grow, along with the need for such services.
Delivering on that commitment means investing in the innovators, technologies, and programs that treat the whole child – programs that have always made us stand out as an organization.
There’s a common misconception that palliative care means end-of-life care, or hospice. While end-of-life care can be a part of palliative care, it’s not the entire picture.
Phoenix Children’s Palliative Care program is critical to this mission. Since 2009, the program has provided
Phoenix Children’s Palliative Care program can support children and their families in many ways:
Phoenix Children’s is a destination for excellence and continues to grow. Phoenix Children’s | Palliative Care and Bereavement Program
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Coordinating information and communication with the care team Explaining an illness to a child and their siblings Helping to relieve or manage pain and symptoms Offering consultation and care from an interdisciplinary team of medical doctors, social workers, child development specialists, and other experts Providing specialized care from a child life specialist Supporting families and loved ones as they cope with a child’s life-limiting condition Guiding families through end-of-life care and advance-care planning Providing bereavement support for up to two years
Phoenix Children’s Palliative Care program ensures families do not need to leave the Valley to get family-focused support services.
PATIENT AND FAMILY SUPPORT We believe that children deserve more than innovative medical treatment and world-renowned practitioners. Family-centered care focuses on the needs of the child first, and values the family as an important member of the care team. As our community continues to grow, so do the familycentered services that Phoenix Children’s offers, including palliative care. When a child has a serious health condition, it impacts the entire family in all areas of their life. Consider a child with cerebral palsy, cancer or even the need for a heart transplant. Often, it’s hard for the child and their family to understand the condition, and their personalized care plan. Through Phoenix Children’s Palliative Care program, families receive the extra support they need. With our programming, we give families a co-pilot, who gets in the car and helps figure out where to go and how to get there. Navigating a life-limiting condition is hard. When families have access to our palliative care services, we can ensure quality of life for everyone on the journey. Phoenix Children’s | Palliative Care and Bereavement Program
“Palliative care is about
living. It’s about making
the most of every day when faced with a potentially life-threatening or lifelimiting condition.”
Tressia Shaw, MD Program Director Palliative Care
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FAMILY EDUCATION
Thanks to philanthropic support, Phoenix Children’s has been able to grow our Palliative Care program, meeting families where they are and guiding them to where they want to be. We know that patients and families receive a lot of information. Sometimes it’s overwhelming and confusing. Phoenix Children’s Palliative Care team helps figure out what a child and their family understand, and what information could help them understand more. They work closely with other departments at Phoenix Children’s as well, so families always know what they need to about their child’s condition and what it means for the future.
BEREAVEMENT SUPPORT Phoenix Children’s Palliative Care program expansion has included new services, such as bereavement support. We realize that for many families, Phoenix Children’s becomes like a second home. When a family experiences the death of a child, they can also feel a loss of an entire support network.
A baby with significant heart anomalies was born, and entered Phoenix Children’s Neonatal Intensive Care Unit. While the patient was intubated and sedated, their mother and father were, understandably, grieving while also carrying significant guilt and fear. Palliative Care and Music Therapy were involved in the child’s care, and wanted to provide a memory for the parents to cherish. The infant was baptized at Phoenix Children’s, and the parents stood on each side of the crib with their hands on their baby’s head and under their tiny feet. The patient’s mother chose “Jesus Loves Me” as the baptism song, and the parents were invited to sing along with their music therapist, to hum, or simply to feel their baby’s touch. The family was then provided with a copy of the lyrics to “Jesus Loves Me” that included their baby’s name and baptism date, along with a recording the song as it was sung bedside. This will be a meaningful memory for the parents to hold in their hearts.
The Bereavement Support program makes sure families receive the continued support they need. By connecting through phone calls, in-person meetings, mailings, and support groups with other families who have lost a child, Bereavement Support helps families transition and adjust. The program has seen rapid growth. In 2020, it served 260 families and in 2021, the number increased to 280 families.
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PREPARING FOR THE FUTURE To ensure the Phoenix Children’s Palliative Care program meets the need for these services, we are continuing to add new, specialized staff. We’re recruiting more physicians, social workers, and other providers, growing our expertise and services offered to handle the most complex pediatric cases. In 2020, we helped 543 unique patients through our Palliative Care program, an increase from the 469 patients served in 2019. As the need for our program increases – and more people understand what palliative care can provide – our goal is to keep up with the demand and continue to offer services that insurance may not cover.
THANK YOU We are committed to helping our patients and their families, responding to any stressor that accompanies medical diagnoses or treatment. Because of your generosity, Phoenix Children’s Palliative Care program will be there for everyone who comes through our door, to help them feel comforted and confident every step of the way. Thank you for your commitment to investing in compassionate care, right here in Phoenix.
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