Sign Up For More InfoNEW YORK CITY, Nov. 17 - Every year, over 50,000 children die in the United States, and 80 percent of them die in hospitals.
Palliative care for these children is supposed to ensure that their lives do not end with pain or distress that was preventable, and that their traumatized families receive comfort and support. Sadly, mounting evidence suggests that the healthcare system is falling far short of this goal.
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| Dr. Alan R. Fleischman, Senior Vice President of the Academy and a pediatrician, speaking about ethical issues surrounding palliative care. |
With a mandate to alleviate suffering among dying children and their families, experts at the conference shared cutting-edge knowledge and skills essential to achieving high-quality pediatric palliative care. Speakers at the conference examined the challenges of equipping clinicians and institutions with the traits needed to provide optimum care during these times of crisis, and attendees learned about innovative, field-tested programs of family-centered pediatric palliative care. The conference served as a launching pad for an innovative curriculum that hospitals can use to improve the quality of palliative care. The peer-reviewed curriculum, which IPPC developed and pilot-tested, includes facilitator's guides, case studies, and video interviews with families who have lost children or who are now caring for seriously ill children. (The written materials are free and can be downloaded from IPPC's website {www.ippcweb.org} and the videos can be ordered from the same website).
Care for children with chronic disease is "morally, legally, spiritually and ethically complex, and the many grey areas can lead to moral gridlock," said Dr. John Lantos, President of the American Society of Bioethics and Humanities and Chief of General Pediatrics at the University of Chicago. Medical professionals have an obligation to work for consensus in the midst of these dilemmas, said Lantos, one of the many compelling speakers at the conference. "We have ended up with a healthcare system that satisfies nobody, in which spreadsheets have become moral documents," he said.
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| Conference attendees included doctors, ethicists, academics and other pediatric professionals. |
Doctors should have "ethics consultations" with families of chronically ill children early on, he said. This will define value conflicts from the start, assure that the best interests of the child are followed, foster parental decision-making in ambiguous cases and give ethical comfort to family and clinicians. The child should be involved in making decisions about his treatment whenever possible, and his wishes should always be paramount, Fleischman emphasized. "This demonstrates respect for the child," he said. This "family-centered care" approach leads to better health outcomes and to a wiser allocation of resources, Fleischman said. "Not only is it the right thing to do, but it is also more effective," he said.
Doctors must also never forget that they are dealing with vulnerable people at one of the most sad and difficult times of their lives, and should take all possible measures to treat them with dignity and care. Several parents who've endured the death or serious illness of a child addressed the conference, some recounting negative experiences with the health care system that didn't have to occur. Elizabeth and Peter Scheff told of a particularly awful moment that occurred in the months before their 11-month-old daughter died last year. They were at a prestigious but unfamiliar institution, hopefully awaiting results of some special tests. The shocking news that their daughter was gravely ill was delivered in the worst possible way: by a stranger out in a hallway, where their grief was all too public. No one should ever have to endure such pain, Peter Scheff said.
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| Dr. Richard Behrman, Clinical Professor of Pediatrics, giving the keynote address. |
Pediatric professionals and institutions must work together to develop and implement protocols that ensure culturally-sensitive, compassionate and consistent care to families in palliative, end-of-life and bereavement situations. Schools of medicine, nursing and other health specialties must collaborate with professional societies to create curricula and practical experiences that will ensure basic competence in this field. Public and private insurers should eliminate certain eligibility restrictions in order to provide greater reimbursement for palliative, end-of-life and bereavement care. And, national public and private organizations should collaborate to improve the collection of data that guides the provision, funding and evaluation of this type of care. Now that IPCC has developed effective tools, healthcare professionals and institutions can equip themselves to begin making these quality improvements and ensure that compassion is routinely, rather than haphazardly, offered as part of palliative care.
Other IPCC collaborating partners are: the National Association of Children's Hospitals and Related Institutions; the Society of Pediatric Nurses; the Association of Medical School Pediatric Department Chairs; the American Academy of Hospices and Palliative Medicine; the Hospice and Palliative Nurses Association; and, the Institute for Johns Hopkins Nursing. The New York Academy of Medicine is a non-profit institution founded in 1847 that is dedicated to enhancing the health of the public through research, education and advocacy, with a particular focus on urban populations, especially the disadvantaged.
Posted on 11/17/2003
Contact:
Malini Doddamani
Director of Communications
mdoddamani@nyam.org
212.822.7285