Pediatric palliative/hospice care is integrated medical care for infants, children, and young adults living with a life-limiting illness. Care is provided by an expert team of medical providers and spiritual and emotional care specialists who partner with the patient’s primary care team to provide family-centered services that encompass the total care of a child and family. The care team addresses complex symptom and pain management, guides families through treatment choices and transitions, and provides spiritual, developmental and emotional support for the patient and family members. Pediatric palliative/hospice care aims to provide supportive services for seriously ill children at any age, and at any stage of illness.
By focusing holistically on a family’s unique needs, pediatric palliative/hospice care provides an additional layer of support to enhance the wellbeing of children and family members.
The primary goal of palliative/hospice care is to alleviate pain, fatigue, discomfort and anxiety that can result from a serious illness or from aggressive curative treatments. This can mean attending to the complex physical symptoms using personalized medical treatment, as well as providing relief from stress and anxiety through integrative therapies.
A highly-skilled team of medical providers will interface with the family’s primary care team and the family to provide comprehensive symptom management. While each child’s medical treatment regimen will largely depend on the child’s condition and specific circumstances or wishes, pediatric palliative/hospice care generally treats common symptoms including:
- Dyspnea (shortness of breath)
- Nausea and vomiting
- Pain and Fatigue
- Delirium (agitation)
- Constipation and diarrhea
- Congestion, coughing and other respiratory issues
- Edema (swelling)
Emotional and Spiritual Counseling
Facing a serious or life-limiting illness can be frightening, both for the child and for immediate and extended family members. Pediatric palliative/hospice care can provide the emotional support and spiritual guidance to help families through this journey. Emotional and spiritual support teams focus exclusively on providing children and families with a space to express emotions and explore spiritual, cultural, and personal beliefs that promote emotional harmony during particularly challenging times. A family-centered approach to complete care allows pediatric hospice services to improve the quality of life, while ensuring that the entire process is aligned with the family’s unique values or traditions.
Integrative therapies can be utilized to provide comfort or to alleviate symptoms related to pain, stress or anxiety. Pediatric palliative/hospice care includes emotional and spiritual support teams consisting of the following professionals:
- Chaplains: Chaplains are available to palliative/hospice care patients and their families who seek spiritual support, regardless of their individual religious beliefs, affiliation or non-affiliation. They may assist in the process of preparing an advance directive, provide the resources needed to observe religious practices, listen to and honoring spiritual concerns, support through prayer, or serve as a liaison between you and your community clergy.
- Medical Social Workers: Medical Social Workers are a core part of the pediatric palliative/hospice care team, and can help you and your child adjust to new personal, social and emotional challenges that come with facing a serious illness. In addition to steadfast emotional support, medical social workers can help you to navigate community and financial resources, assist with long-term care planning, and provide crisis intervention.
- Child Life Specialists: Child life specialists are available to work with the patient and siblings to promote understanding and normalcy through creative expression and play. They can create coping plans to determine techniques that will reduce fear and anxiety in children, provide legacy-building activities, and provide developmentally appropriate emotional support and processing. Child life specialists are trained to support the unique needs of pediatric patients, siblings of children with complex medical needs, and children of adult patients.
- Licensed Massage Therapist (LMT): A LMT provides massage therapy to promote relaxation, improve quality of sleep, and decrease pain. A LMT can utilize a wide variety of massage techniques, allowing for highly specialized treatment plans. Massage services can be provided to both patients and family members.
- Music Therapist: A music therapist works closely with patients and families as a part of the psychosocial care team. Music therapy works to ease discomfort and anxiety, and allows for processing and expression using music as a therapeutic modality to improve mental and physical health.
One of the unique benefits of a pediatric palliative/hospice care program is access to a compassionate group of community volunteers. Hospice care volunteers can provide an additional layer of emotional support and companionship to hospice patients and their families.
Volunteers can visit patients and families in the home, hospital, or an extended care facility to spend time with a child or family. The role of a volunteer varies greatly from companionship to assisting with everyday tasks.
Contact a Pediatric Hospice Program
To find out more about the benefits of pediatric palliative/hospice care, contact KidsCare of the Rockies today. KidsCare of the Rockies is a pediatric palliative and hospice program that provides comprehensive care to children living with a chronic, serious, or life-limiting illness and their families. Learn how our compassionate, supportive pediatric team can improve the quality of life for your child and family.