photo: courtesy of the George Mark Children's House
Staff members play with client Michael Teare in the George Mark Children's House multi-sensory room
We tend to think of death as something that happens to older people: those who have at least had a chance to live, to forge relationships, families, careers... But how do you come to terms with the approaching death of someone who hasn't had those chances? Providing care at the end of a child's life is very different from caring for a dying adult. It requires a different medical approach, a different philosophy and even a different way of dealing with health care costs. Reporter: April Dembosky
[Photo: Michael Teare plays with staff members in the multi-sensory room at the George Mark Children's House.]
Current national debate around end-of-life care is centered around elderly patients. But what about when children die?
To receive hospice services under publicly funded programs in the U.S., the rules are the same whether the patient is 85 or 5. Doctors must declare that the patient has six months or less to live and patients must forego any treatments intended to prolong their life. So the only way kids can get the kinds of services that make them feel more relaxed and comfortable is if they agree to stop trying to get better.
In California, Medi-Cal has refused to pay for children's hospice care while they are undergoing curative treatments -- until last fall when five counties began testing a pilot for delivering hospice and life-prolonging care at the same time. This fall five more counties will be folded into the new rules that cover these end of life costs.
George Mark Children's House in San Leandro is one of the country's first hospice centers designed specifically for terminally ill children. These doctors and staff have developed a model for delivering hospice care to children and helping families cope with the loss of a child. But paying for these services continues to be a challenge, even with the new law.
Where the hospices are
Thirteen California counties are participating in the pilot program for children's hospice and palliative care.
The first five began in fall 2009:
Alameda, Monterey, San Diego, Santa Clara, and Santa Cruz
The next six are scheduled to roll out in fall 2010:
Humboldt, Marin, Orange, Sacramento, San Francisco, and Sonoma counties
The final two in 2011:
Fresno, and Los Angeles counties