McMaster Children’s Hospital (MCH) is a special place—a hospital with all the expertise and treatments you would hope for children with serious illness while still offering the feel of a close-knit community in Hamilton, Ontario. Hamilton, however, does not have a dedicated children’s hospice, which are becoming more commonplace in cities with children’s hospitals (there are now 8 across the country). When it comes to options for location of death, home is only practical and desirable for a certain portion of families. As a result, the majority of children who die in our region do so at MCH. For this reason, it is of paramount importance that we bring the enhancements of hospice care to the hospital bedside setting.
Relatively new, Quality of Life and Advanced Care (or QoLA Care) is the specialist pediatric palliative care program at MCH. QoLA Care was asked to champion a project designed to enhance the in-hospital care of children at the end of life. The nursing team who conceived the idea requested an inventory of items and resources for families and health care professionals to use improve care before and after the death of a fetus, infant, child, or teenager. Ward stock rooms don’t carry the typical items needed for hospice care. Nurses wanted to be able to “offer more,” to “answer more questions,” and to engage with the special moments of legacy creation with families. We also had stories of family experience which varied depending on timing, location of care, and experience of care teams. The project seeks to enhance the standards of end of life care across all areas of MCH.
The Comfort Cart is a repurposed crash cart that now holds items that include:
- Comfort Enhancements (e.g. projection night lights, lamps, music and quilted blankets),
- Legacy Creation (e.g. hand mold making, a digital stethoscope for recording heartbeat patterns),
- Personal items (e.g. toiletries, creams, universal phone chargers so parents don’t feel a need to leave the bedside),
- Psychoeducational items (e.g. information on funeral planning for children’s funerals, how to cease breastfeeding, and how to support the emotion and information needs of grievers of all ages),
- Books (e.g. those that aid in communication and special memories at the end stages of a child’s life, those that support the early stages of grief for adults and children),
- Other necessary items for personal and nursing care of the dying child.
The Comfort Cart provides easy and standardized access to care items and early bereavement resources and information. Regardless of where in the hospital a child dies, staff will have tangible, relevant and helpful supports to offer that improve comfort for the dying child and his or her family members, and additional supports for the grief journey as it begins. Consultation with stakeholders is ongoing, with efforts to continually enhance its relevance to local Indigenous peoples and communities of variety of faiths, cultures and languages.
In celebration of the first National Hospice Palliative Care Day for Children 2020 we will formally launch The Comfort Cart across pediatric units at McMaster Children’s Hospital. Our deepest appreciation for the HHS Volunteer Association for their funding of this important endeavor.
Cindy van Halderen, MSW, RSW
Clinical Specialist, Quality of Life and Advanced Care Program, McMaster Children’s Hospital