Allowing Children to Die with Dignity
NCDA spans the gaps in the provision of quality end-of-life care for children, by strengthening programs through caregiver education, facility development, and pediatric palliative care advocacy.
A few years ago, I met Joan, founder of Sunflower House, and another nurse from a neighboring hospice organization located in South Africa. They presented a slide show of what they are doing to provide care to the sick and dying in South Africa. What floored me is that children are dying in conditions that are nearly unheard of in the United States. Comfort exists for these children at Sunflower House in South Africa.
Sunflower House is a warm, cozy, and safe haven in which terminally ill children can receive nursing and pastoral care. It is a facility that looks like any regular day care center. There is a playground, a garden, and several smiling children running around. Sunflower House is unique with the flowers painted on the outside wall. In the middle of each flower is the name a child that has passed away while in the care of the specially trained staff of Sunflower House. Over 300 names have a place on the wall.
What started as a garage sale to support their efforts became an organization to carry out a larger cause. I traveled to South Africa in February 2008 to visit Sunflower House. As a nurse, it came naturally to gather data, assess the situation, and develop how No Child Dies Alone can support the Children's Hospice efforts. I interviewed dozens of community members. I visited the local hospital and many of the homes in the Townships. I provided hundreds of hugs to the dozens of children that are receiving hospice and palliative care.
The situation is grim, the problems overwhelming. I often asked, “Why bother trying?” The common answer, "It's for every smile that we can see on these children's faces right now." It was clear how hospice homes for children impacted the care and further the development of their hospice program. Sunflower House started with one child. Now, over 700 children a month are overseen by the hospice organization that supports Sunflower House.
South Africa is one chapter in this story. The next chapter begins with a trip to Tegucigalpa, Honduras. Far from the city, past rutted dirt roads, into the surrounding mountains, two homes exist that accept terminally ill children. Few doctors and nurses make the trek to tend to the sick and dying. Each home has simple, basic rooms in which to care for those close to death. In the chapel of one home, over a hundred names are inscribed on a wooden cross to remember those that lived, and died in the home.
I met with doctors and staff at the bustling children's cancer clinic and hospital unit where several hundred children a month receive treatments. Nearby is a respite home for families to stay while their child receives treatment. I had a lovely conversation with an elderly woman at a long-term nursing facility and discussed palliative and hospice care measures with the staff in the area hospitals.
I noticed that the HIV/AIDS epidemic had the largest influence, no matter the country. Each country has its own cultures, religions, economy, and available workforce that influenced how to care for terminally ill children. Additional ideas sprouted in light of the various needs uncovered in Honduras for which No Child Dies Alone is exploring in the quest of a Vision, and the delivery of a Mission.
During the sessions at the ELNEC Pediatric Training Course, it became evident and clear how much basic training in pediatric hospice care provides a level of comfort and courage for parents and caregivers to face the complex challenges of a terminally ill child. Multiple examples were given of the compassion of nurses and other hospice trained individuals that the simplest gestures made significant impacts in the families’ lives. My own experience in advocating for a 19 year old couple to take their 6 week baby boy home to die surrounded by family, added to the concept of No Child Dies Alone, and what it means to allow children to die with dignity.
No Child Dies Alone has developed a program to address the needs of the people who tirelessly toil to provide the best care they can to the most fragile, dying children. The daily testament to the suffering, the tears, the smiles and the joys of care-giving with children places a unique set of burdens for the professional caregiver. No Child Dies Alone acknowledges the stress that professional caregivers accept and provides the tools for caregivers to nurture their spirits, refresh their souls, and continue their work.
Marie Wrinn, founder