What is Pediatric Palliative care?

Pediatric Palliative Care is an active and total approach to care for children with life-threatening conditions, from the point of diagnosis, through the ups and downs of active treatment, and including end of life care when necessary.Care focuses on comfort, quality of life, maximizing growth and development to the degree the child is able, and support for the child in the context of family-centered care. Pediatric palliative care involves a coordinated, interdisciplinary approach that follows the child and family across settings, and throughout their illness or disability.

Who benefits from palliative care?

Palliative care can be for children who face a serious, life-threatening condition, and who are coping with uncertainty regarding their future. Palliative care is available for c hildren undergoing active treatment for their disease or disability as they and their families face many challenges over time. They benefit from the consistent support, guidance and expertise of the inter disciplinary team. The palliative care team most often works together with the child's primary physician and care team. Palliative Care focuses on assisting with identifying goals for care, symptom management strategies that support comfort and improve quality of life, and facilitating coordination of care and advanced care planning for complex and changing needs. This is sometimes referred to as "non-hospice palliative care," where our focus is on "hoping for the best and also preparing for the rest."

Children who we anticipate someday they may require end of life or hospice care can also benefit from palliative care support during those times when they are doing better while managing the issues and concerns that go along with coping with a life-threatening condition, including those fears that someday, this child may die.

The involvement of the palliative care team over time can help kids and families identify options, anticipate needs, and cope with the stresses they face more effectively as a family.

What is the difference between palliative care and hospice care?

While both hospice and palliative care emphasize a comprehensive and holistic approach to care, palliative care is available to children and their families from the point of diagnosis through the ups and downs of their illness experience, and through cure or end of life care as needed. It is designed to accompany kids and families on the journey, which can sometimes feel like a roller coaster of ups and downs.

Children who have successfully completed treatment, for example those who have had a liver transplant, or completed high-risk cancer treatment, can “graduate" from palliative care.

In hospice care, the focus is on comfort and quality of life and is primarily for children who are not pursing cure directed therapies. This care may be offered for months prior to the children's death. Hospice care may become an important chapter in the care of some children. Hospice includes attention to the physical, emotional, psychological, spiritual, and social needs of the dying person and their family. Hospice caregivers have expertise in pain and symptom management and emotional care, as well as family support during this difficult time. Hospice care can often help families who wish for care to be delivered outside the hospital setting.

Both hospice and palliative care services extend into grief support and bereavement care for the family as needed.

Hospice is philosophy of care, but also an insurance benefit, so it is important to clarify how this term is being used, and what implications for care are for the individual child and family. There may be confusion about how the insurance benefit commonly used for adults can work for children. Because the needs of sick children are very different from those of ill adults, it is important to examine these issues and negotiate the best fit of needed services and reimbursement or payment strategies.

Depending on the type of palliative care program available, the addition of an in home hospice provider is often needed to allow for care to be delivered in the child's home, particularly if death at home is a goal for the family. It is extremely important for providers to explore options of care for their patients and families which can include both hospice and palliative care services.

What should I expect when end of life is approaching?

The expected death of a child raises many questions and concerns for both the family and the professionals involved. A child's death impacts the community in which they live, too. Many strong, difficult feelings can emerge, including fear, anxiety, sadness and grief. Other experiences are also common, including relief, joy and spiritual satisfaction. There is no right or wrong way to think or feel. Most people describe a series of ever changing thoughts, beliefs, feelings and meanings within their unfolding experience.

Impending death also brings on a series of physical changes in the ill child, too. This pattern of changes can be different for different children, but can often be understood and planned for in the case of a particular child. Providers are encouraged to talk with the palliative care or hospice team to identify what they can expect from their patient , and how best to prepare the patient and family for this final phase.