Pediatric Palliative Care

Quality of life education and practice

Carma Erickson-Hurt, Doctor of Nursing Practice (DNP), is a Project HOPE volunteer and expert in palliative care. Carma has volunteered her specialized skills to provide health care training in palliative care and end of life nursing education all over the world.

Early this November, I spoke with an interdisciplinary group at the Shanghai Children’s Medical Center. This group included nursing leaders, bedside nurses, physicians and social workers, and focused on the integration of pediatric palliative care – a relatively new concept in China. We had great discussions and there were many questions.

The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Pediatric palliative care includes the entire family and focuses on quality of life as defined by the individual patient and family. Palliative care experts include a team of doctors, nurses, social workers, spiritual experts and others trained in palliative care. Care is provided through an interdisciplinary approach directed toward pain and symptom management, advance care planning and information sharing through informed discussions, psychological, social and spiritual support.

Although palliative care and the importance of the interdisciplinary plan of care are relatively new concepts in China, the staff at the SCMC is eager to develop the expertise and then serve as a model for the rest of China. They have already begun to incorporate this type of care with pediatric patients and their families.

Annually, there are more than 500 new patients with cancer admitted to the hospital.  Some children with incurable cancer will have their last moment of life spent at the hospital. The need for palliative care throughout the cycle of care is well recognized among health care professionals.

Sometimes children and families need time alone, so the staff at the SCMC created the “Blue Planet Room” – a peaceful place that incorporates a soothing and comfortable environment far removed from the rest of the busy hospital. This beautiful space was decorated through the generous gift of local interior designer Mr. Zhu, Jie.

The staff knew they needed this room, but didn’t have a clear plan on how and when to use it. Together, we came up with a strategy for implementing its use – one that would emphasize the benefits of this room to patients and their families. I’m confident that the staff will now be more proactive about creating palliative care and policies and procedures.

The room holds a large bed where families can be physically together in a close and loving way, unlike the typical hospital bed or crib. The room has a large screen television for playing movies or listening to music. Peaceful décor includes pictures of Mother Goose with her baby gosling, and an angel lightly reflected on the wall reaching for a star. The ceiling is painted with stars. Toys and stuffed animals are available.

The palliative care training included topics such as pain management, differentiation of morphine dosage for patient comfort, approaches to disclose disease prognoses with parents, and the suggested time to start the bereavement consultation. Future training is planned to continue to develop the expertise of the palliative care interdisciplinary team members.