The Stepping Stones Pediatric Palliative Care Program at C.S. Mott Children’s Hospital offers active, comprehensive support for managing the care of infants, children and young adults who have complex, serious, and/or life limiting conditions.
What is pediatric palliative care?
To palliate means to provide relief and comfort. Some people provide palliative care in our daily lives, for example, when we play with a sick child or give pain or cold medicines. These actions don't take away a child's illness, but make everyone more comfortable during the illness.
Palliative care is a comprehensive approach that focuses on the physical, psychological, social and spiritual needs of patients with chronic or life-threatening illnesses. Palliative care is not curative, but eases the suffering of sick children and their families.
Many serious medical conditions can shorten the expected lifespan of children or limit their abilities and choices in ways that can’t be prevented. Sometimes these problems result in ongoing physical, emotional and spiritual suffering. In such cases, it is important to make a special effort to identify ways to help children and their families have the best quality of life possible.
Palliative care can be appropriate at all stages of illness, and can be provided at the same time as active or life-prolonging treatments.
What does the pediatric palliative care team do?
The palliative care team is a team of doctors, social workers, nurses and spiritual care providers who are available around the clock, every day of the week. When invited, our specialists will work with your family and your primary care team to help the patient and their families have the best quality of life possible.
Palliative care is tailored to the needs of each patient and family, and services may include:
- Helping families identify what is most important to them (goals of care)
- Helping families and patients communicate their preferences and goals to their health care providers
- Assisting families with decision making when a child’s medical condition forces compromises between length of life and quality of life
- Encouraging open and honest discussions about difficult subjects, like dying and death, and how best to allow natural death without unwanted or invasive medical technologies when the time is right
- Easing the symptoms and suffering caused by both disease and its therapy, such as pain, anxiety, nausea and difficulty breathing
- Helping family members deal with feelings of guilt, anger, powerlessness, frustration and grief during times of illness, uncertainty, transition and loss
- Easing burdens of caregiving by identifying resources and services designed to help families of children with special or complex needs
- Helping preserve dignity, comfort and peace for children with deteriorating health due to end-stage terminal conditions
- Increasing awareness of special charitable services available to children with advanced illnesses, such as the Make-a-Wish Foundation, professional photography and personalized music
Who benefits from pediatric palliative care?
Serious illness in a child affects everyone involved in the child’s life and care. It is our goal to be aware of the ways we can assist anyone in a position to positively affect that child’s quality of life.
A palliative care consult is available for all infants, children and young adults who have a complex, serious and/or life-limiting condition. Prenatal consults are also available for serious prenatal conditions to help families develop a birth plan individualized for the infant and family.
We consider the full circle of people involved in the child’s life, including:
- The patients themselves, who are suffering physically, emotionally or spiritually as a result of serious illness
- Family members, including siblings, who often suffer alongside a sick child, and who often do not seek help for themselves
- Friends and community members who frequently have questions or are unsure how to be helpful
- Healthcare providers who may struggle with how to best support a particular patient or family
What is the difference between palliative care and hospice?
Hospice is focused on quality of life during the end-of-life and dying process. Palliative care addresses any suffering over the entire process of a chronic or progressive illness.
Palliative care often works closely with hospice in cases where such services are appropriate and desired by patients and families. We can assist with transitions to home hospice or hospice facilities if the family feels these services are appropriate. We can also provide hospice-like services on an inpatient basis if children are admitted to the hospital.
Take the next step
Palliative care services are provided by physician referral only. For a palliative care consultation, talk with your doctor about a referral to our pediatric palliative care consultation service. For more information, call 734-232-9593.