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Helping children live with enduring illness
In summer 2010, the Connell School of Nursing (CSON) launched the country’s first graduate nursing program in palliative care for children. The program was initiated by a CSON professor who specializes in geriatric studies and developed by an Arts and Sciences alumna 10 years out who went on to work as a nurse practitioner in a New York City hospital. Both women were drawn to the new field by an increasing need: With medical advances, children with serious diseases—from cystic fibrosis to cancers to HIV—are living longer. They and their families face physical, emotional, and social challenges that require specialized attention over months, often years.
The field of palliative care developed alongside the hospice movement in the 1970s. But, whereas hospice care is meant to ease suffering in the final months or weeks of a person’s life, palliative care is intended to help patients live with chronic, sometimes fatal medical conditions. Hospice care often takes place in the home or in a dedicated center; palliative care is most often administered by hospitals and involves multidisciplinary teams. A child with leukemia, say, may see a pediatric psychologist, an oncology social worker, and a specialist in pain management. As children grow from infancy through adolescence, pediatric palliative caregivers must adapt to the changing developmental needs of their patients. Often it’s an advanced-practice nurse who coordinates the team’s efforts.
In 2006, CSON received a three-year, $728,000 federal grant to create a curriculum in general palliative care among its master of science offerings. Associate dean for graduate programs Patricia Tabloski was named director of the project, and one of the first applicants was a nurse practitioner working in pediatrics. This surprised Tabloski. “I thought, Why would she be attracted to a course geared toward treating adult patients with terminal illness?” In conversations with the applicant it became apparent to Tabloski that palliative care must be adapted to patients “across the [age] spectrum.”
When Tabloski applied for a three-year grant renewal in 2008, she proposed an additional program focusing on children. A grant for $875,000 was approved in 2009 by the Health Resources and Services Administration, an agency in the U.S. Department of Health and Human Services, and shortly thereafter CSON hired Vanessa Battista ’01 to help construct the pediatric palliative care curriculum. With an undergraduate major in psychology and an MS from Columbia University’s nursing school, Battista had been working with patients of all ages suffering from neuromuscular diseases.
Consulting with pediatric specialists, many of them at Boston hospitals, Battista designed a program of three semester-long courses, which she teaches, and 750 hours of clinical experience at hospitals in Boston, Philadelphia, and Washington, D.C. Given the newness of this specialty, the courses are taught largely through case studies and role-playing. Topics covered include differing cultural approaches to death and dying; ethical/legal issues related to serious illness; resource availability and fiscal issues; age-appropriate pain and symptom management; and the role of the nurse-leader in the interdisciplinary team.
A critical component of the program is the focus on developing strategies for communication, not only with parents but also with sick children and their siblings. In the past, Battista says, “people never talked to the kids.” Students practice having “difficult conversations.” They learn how to “fire warning shots” to prepare families for bad news. In this, Tabloski notes a similarity with geriatric nursing, where nurses often must deal with the larger family. The major difference, she says, is that most families find it easier to eventually accept the death of a loved one whose life has been long.
On October 7, some 130 nurses and other health care professionals convened in the Murray Room for a daylong regional conference on pediatric palliative care, sponsored by CSON. Several speakers, including Tabloski, made the point that palliative care does not mean giving up on curing illness. But rather than seeing death as a failure, Tabloski said, nurses should ask, “Did we do our job to make that a good death?”
Dave Denison is a Boston-based writer.