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2010

Gilchrist Kids Provides Pediatric Hospice Care at Home

August 16, 2010
gilchrist Kids

On a recent afternoon at Hopkins Children’s, Penny Allen was teaching a father how to administer pain medication to his dying son by means of a portable PCA pump. At his parents’ request, the young child was going to receive end-of-life care in his home, instead of in the hospital. A nurse with Pediatrics at Home, a company of  Johns Hopkins Home Care Group (JHHCG), Allen helped the family transition into the care of Gilchrist Kids, the Baltimore region’s new hospice  program caring for children from infancy through 17.

Gilchrist Kids, which opened July 1, is a new service that Hopkins Children’s can offer children and families when necessary. Hopkins Children’s  Harriet Lane Compassionate Care Program has been providing palliative care education and support to staff and patients in the hospital since 2000. A longtime provider of care for chronically ill children in their homes, Pediatrics at Home also provides palliative care to infants and children.

Pediatrics at Home staff manage pain and symptoms and help children and families adjust to life with a complex illness, enabling children to stay at home, in school and in their community.  They collaborate with Hopkins Children’s on education and services for children and families from diagnosis and treatment – and, if necessary, through end-stage into bereavement.

Given that hospice care is an extension of palliative care, says Director of Pediatrics at Home Sue Huff, “Gilchrist Kids enhances what we can offer. We’ve now a hospice partner in the community that is committed to developing pediatric expertise. Pediatrics at Home will contract with Gilchrist to provide and deliver high-tech medical needs, including IV therapy, pain management, respiratory and Durable Medical Equipment  in the home. Part of this partnership and commitment includes our preparing children and their families for hospice and transitioning from hospital to home.”

The new home-based hospice program not only helps children with life-threatening illnesses and injuries live out their lives in the comfort of their home environments, it provides emotional support for families. Hospice care is provided by an interdisciplinary team of physicians, nurses, social workers, bereavement counselors and other professionals trained in providing what is known as “comfort care” for children.

“Gilchrist Kids completes our continuum of home health care,” says Mary Myers, JHHCG’s chief operating officer. “We have confidence in Gilchrist’s ability to deliver the highest quality of care for their youngest patients.”

Her confidence is understandable, as Gilchrist has been a JHHCG provider-of-choice for adult hospice care for years

Developing Pediatric at Home’s expertise in providing palliative care was a chief goal of Huff’s when she was appointed director in 2006. Huff, a former oncology nurse and a nationally-recognized expert in pediatric end-of-life care and training, along with Harriet Lane Compassionate Care program director, and an expert in bioethics and palliative care, Cynda Rushton, Harriet Lane Compassionate Care medical director Nancy Hutton, palliative care support specialist Matt Norvell, and patient and family-centered care coordinator Barbara Hall and others first trained Pediatrics at Home staff in bereavement communications, physical and emotional end-of-life  issues and pain management. Then they trained Gilchrist staff in the intricacies of caring for children.

“Dying in the hospital should not be the only option for children and families facing terminal or chronic life-limiting illness,” says Huff. “Quality of life is paramount, and children want to be home, in school, with family, friends and in their communities. Most families when they have the support of palliative care and hospice programs choose to remain at home.”

Hutton serves as a pediatric palliative medicine consultant for Gilchrist Kids.  Brenda Blunt, a neonatal intensive care specialist from Johns Hopkins Bayview Medical Center, is its program manager.

An additional pediatric hospice service, Dr. Bob’s Place, a facility of the Joseph Richey Hospice for adults, is under construction in downtown Baltimore. When complete, the 20,800 square foot facility will offer 10 pediatric hospice beds and full hospice services for children.  

During the next year, Gilchrist Kids expects to “Guide the Way” for about 75 children and their families.

For information or to make a referral to Pediatrics at Home, call 410-288-8040.
For more information or referral, call the Gilchrist Hospice Referral Center at 1-800-HOSPICE (1-800-467-7423).
 

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