A home-care program for terminally ill children -- one of the first in the United States -- has been opened by the Hospice of Northern Virginia.
During the past three years, the hospice, which is in Arlington, has provided care for more than 450 terminally ill adults and their families.
"To consider children in the program is a very natural extension of our services," says Dr. Peter G. Bernad, who recently was appointed medical director of the hospice. Based on information from local pediatricians, says Bernad, the hospice expects to serve six to 10 children this year. He said he and his team are ready to care for the first young patient.
The children's hospice program will be administered by Bernad with a team of pediatricians, nurses, social workers, clergy teachers and trained volunteers. The team will cooperate with the child's primary physician in providing the care.
Spiritual godmother to the children's hospice program in Northern Virginia is Dr. Elisabeth Kubler-Ross, a Swiss-born psychiatrist who lives in California. Working with thousands of terminally ill patients during the past 20 years, she has advocated their right to die at home, surrounded by family and familiar sights and sounds instead of among machines in a hospital's intensive care unit.
The children's program in Northern Virginia was pushed into reality by Ann Dailey of Lake Bancroft, Kubler-Ross' student and friend. Daily, who is the mother of two teen-agers, met Kubler-Ross in four years ago when Dailey attended a week-long seminar on death and dying.
Dailey had enrolled, she said, because she wanted to deal with the grief and anger the felt after three members of her family died within nine months. "By the time I left Elisabeth's workshop, I had faced the ultimate fear of death and was ready to really live," she said.
Dailey also came away with a conviction that hospice care was the most compassionate and natural way to provide support for the dying and their families.
When a friend called and told Dailey that the friend's 8-year-old son was dying, Dailey thought immediately that he should get hospice care. "His parents wanted Chris to die in a hospice setting. I called four hospices in the area, assuming that they would take the child. But they all refused," Daily said, because they were licensed only to take adults.
Dailey says she felt furious, "absolutely livid," and immediately called Kubler-Ross.
Dailey recalls Kubler-Ross' advice. "Well, Ann," she said, "you'll have to do something about it."
Soon after, Dailey plunged into the details of proposal-writing and fundraising and succeeded in mastering both. In March 1980, the board of directors of the Hospice of Northern Virginia committed itself to developing a children's home-care program.
At the end of May, Bishop Thomas J. Welsh of the Catholic Diocese of Arlington donated enough money to cover development costs. In July -- a year after the phone call that had launched Dailey into action -- the board of the Hospice of Northern Virginia voted to implement the program by year's end.
In September, the hospice will supplement its home care for adults with a 15-bed inpatient facility in the former Woodlawn School at 4715 North 15th St., near Arlington Hospital. Eventually, the facility may be open to children.
Bernad said in-patient hospice care generally is as expensive as regular hospital care, but home-care would much less expensive. Usually, he added, hospice costs are covered by private insurance plans.
Regardless of financial resources, Bernad emphasized, "no patient has ever been turned away."
Josefina B. Magno, former medical director and cofounder of the Hospice of Northern Virginia, said she sees little difference between a hospice home-care program for adults and one for children. "The mechanics of the program are the same," she said.
Magno recently left the Hospice of Northern Virginia to become executive director of the National Hospice Organization.
Asked why there have not been more hospice care programs for children, Magno says that the main reason is adults find it more difficult to deal with the death of a child than with that of an adult.
"Both the healthcare professionals and the family are less inclined to say there is no more hope (for a dying child). We feel a great need to go on trying everything. It's very difficult to say, 'This is the end,'" said Magno. "If you deal with an 80-year-old man or woman, it's different. Their life has been full; it's nearing its end, so let's make the patient comfortable and wait for the end. With a child, it's difficult to say this because life is just beginning."
Although Magno helped develop the new children's program, she acknowledges that in the past she refused to admit terminally ill children into her hospice programs. "As a mother of seven, I didn't feel adequately prepared to take care of them," she explains. But now, she says, she fully supports the children's hospice program and agrees with Dailey that it could become a model for others in the nation.
Dailey, whose interest in hospices resulted in a job with the National Hospice Organization as public relations and development coordinator, is exploring with leaders in pediatric care how best to overcome the emotions that block development of children's hospice care programs.
Kubler-Ross says, "We are so conditioned to try all sorts of heroic means to keep children alive. Fear and guilt prevent us from giving them a chance to really know that death is imminent."
Children often die in loneliness, says Kubler-Ross: "If they must trust you, they will tell you what it's like."
Many children have told Kubler-Ross in words and through drawings how frightened they are of death at first, and how uncluttered and filled with light life can be at the end. One boy's last drawing depicted a black bird soaring through a blue sky, with light shining on a wing. According to Kubler-Ross' documented studies of near-death experiences, the earthly journey ends with a flight toward a bright light.
Dailey recalls that when she told Kubler-Ross of plans for the children's program, the doctor "went out into the field and picked a bunch of wildflowers and mailed them to me."
The dried flowers are waiting in a corner of Dailey's home to be transferred to Woodlawn. To her they have become symbols of a love and concern that never dies.
The Hospice of Northern Virginia is at 4715 North 15th Street Arlington Virginia. 22205. Telephone 525-7070.