What is Pediatric Palliative Care?
Pediatric palliative care is specialized care designed to provide children with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis.
End of Life Care services are provided for children and families when cure of an illness is no longer possible.
We provide a comprehensive program of medical and non-medical pain relief, family-centered care planning, mental health services, social support and interfaith pastoral care. Our Palliative Care Program addresses the needs of our residents who have life-limiting conditions, as well as the needs of their families and our staff members who care for them.
Palliative Care Services
Palliative care plans are completed for all children admitted to the Pediatric Center and are discussed by our interdisciplinary care team as needed and on a quarterly basis. Palliative care services provided at the Elizabeth Seton Pediatric Center include:
Sessions are offered individually or as group activities. These sessions focus on the specific goals of empowering a child’s creativity, control and communication, thereby providing a means of progression on a psychological level. Art therapy allows for the safe expression of feelings through the creative process and enhances self-concept through a mastery over art materials. Art therapy also provides our children with the opportunity to strengthen and integrate their personality into their works, while helping them cope with the inevitable changes that are part of life.
Creative Memories Scrapbooking
This form of scrapbooking is an art therapy service that is offered to staff and family members of a child who has recently died. Therapists provide art materials, poetry, quotes and photos of the child, which are used to make scrapbook pages. The completed book is offered to the family as a keepsake.
Another art therapy service, “Precious Hands,” gives families the opportunity to create a lasting memory by imprinting the hand or foot of their child on canvas. All family members are invited to participate in this beautiful program.
Child Life specialists provide developmentally appropriate information and preparation for children, siblings and families to aid in the processing of loss and grief. Through supervised play, a child can express fears, worries and misconceptions, allowing these feelings to be addressed and clarified by their family and the Child Life specialist. As a result, children are able to process their diagnoses and are better able to cope with possible or actual loss.
Our music therapy program allows for the transformation of experiences of suffering into those of meaning. Music therapy can support the connection between spirituality and psychologically significant experiences. Music at the Elizabeth Seton Pediatric Center is used to channel existing emotions in a gentle and therapeutic manner.
Music Therapy at the End of Life
Music therapy provides an opportunity for families to have a musical presence during the final moments of their child’s life. Our board certified music therapists work closely with the child and their family throughout this process. Families may request instrumental music, special songs or improvised relaxation music. Music facilitates the opportunity for a shared family experience while providing space for the expression of grief.
Recreational therapists plan, direct and coordinate special programs for children. Using a variety of techniques including arts and crafts, drama, music, dance, sports, games and field trips, our recreational therapists help maintain and even improve the physical and emotional well-being of the children they treat.
Pain management is a service provided to all residents of the Pediatric Center. Pain is assessed through medically approved pain scales, staff reporting of physical symptoms and resident and family report. Once pain is noted, it is addressed through interventions that include positioning for comfort, emotional support, therapeutic touch, complimentary therapies and the use of medication. Communication with families throughout the process is paramount in managing pain.
Several massage and nurturing-touch techniques are integrated to provide numerous benefits to children including: relaxation, normalization of muscle tone, regulation of the gastrointestinal system, stimulation of the immune system and improvement in sensory awareness. Additionally, parents can gain an increased awareness of their child and his or her needs while enhancing the bonding process through these techniques. Massage instruction is offered in individual and group settings and is performed to meet the individual needs of the child.
Reiki is a complimentary service involving gentle healing touch. Children are provided Reiki, where appropriate, to decrease pain and improve quality of life.
Counseling services are offered to parents and residents by our certified staff psychologist. Grief-specific counseling services provide support to families and children as they cope with stressful reactions to medical prognoses and conditions.
Social Services Support
The support of social services is provided for families following the death of their child. This includes: home visits, follow up calls, letters from staff about their child and/or workbooks on bereavement and loss. In addition, the child’s social worker can assist with finding community-based bereavement counseling programs.
Palliative Care Library
We have a palliative care library with literature on topics including palliative care, pain management, bereavement and loss.
Pastoral care services are available to families for prayer and spiritual guidance. Ministers of the family’s faith tradition can be called in at a family’s request. In the event of a death of a child, a memorial for staff and family (or funeral, if requested) is held at the Pediatric Center. Additionally, an annual memorial is held for children who have died during the previous year.
Members of the Pediatric Center’s Palliative Care Committee provide educational services within the Pediatric Center and to audiences at the local, regional and national levels.
The following disciplines participate in the Palliative Care Program at the Elizabeth Seton Pediatric Center:
- Social Work
- Pastoral Care
- Child Life
- Music Therapy
- Recreation Therapy
- Art Therapy
- Physical Therapy
- Occupational Therapy
- Speech Therapy
The Elizabeth Seton Pediatric Center operates within the guidelines provided by the following professional associations:
- The American Academy of Hospice and Palliative Medicine
- The Hospice and Palliative Care Association of New York State
- The National Hospice and Palliative Care Organization