New Publication
Cultural Competence in Culture Care: A Health Care Professional’s
Passport.
"This pocket guide is intended to be a
reference along a cultural journey, which health care professionals
can explore when providing cancer care." Authored by Armin D.
Weinberg, PhD and Pamela M. Jackson, MS at Baylor College of
Medicine, in collaboration with
Pat Matthews-Juarez,PhD at Meharry Medical College and the Office of
Minority Health HRSA Contract # 6 U78 HP 00015-02-02.
Please call the Physician Oncology Education Program at 1-800-880-1300 ext 1672 and they will ship
copies to you.
Book Review
When children die: improving palliative and end-of-life care for
children and their families
Edited by Marilyn J. Field and Richard E. Behrman. 690 pp.
Washington, D.C., National Academies Press, 2003. $44.95.
ISBN 0-309-08437-7.
The death of a child holds such sadness for many health care professionals
that they will have trouble bringing themselves to read a book that
so openly considers this tragedy. Yet it is critical that those
same professionals delve into this book. Within its pages they will
find documentation of the experiences that children with life-threatening
illnesses have in the U.S. health care system. They will receive
guidance on ways to improve the care of these children and will
be inspired by ideas for future research. When Children Die stands
as a testament to the commitment made by the Institute of Medicine
to explore and publicize end-of-life issues in health care. Its
first two reports in this field dealt with the experiences of adults,
but in 1999 the institute's Board on Health Sciences Policy recommended
an investigation of the care of dying children and
their families.
The institute convened a committee of 14 experts to oversee the
study and secured funding from a variety of public and private sources.
The ambitious goals of the committee members were to develop a report
that, in their words, described the major causes and settings of
death for children; reviewed what is known about 1) the medical
and other services provided to dying children and their families
and 2) the education of physicians and other professionals who care
for gravely ill children; assessed the state of knowledge about
clinical, behavioral, cultural, organizational, legal, and other
important aspects of palliative and end-of-life care for children
and their families; examined methods for communicating information,
determining family and child/patient preferences, resolving conflicts,
and evaluating the quality of palliative and end-of-life care as
experienced by children and their families; and proposed a research
and action agenda to strengthen the scope and application of the
knowledge base for providing effective and compassionate care for
children who die and their families.
This book documents and summarizes the answers committee members
received from their own experience and research and from others
they consulted. These responses include a series of commissioned
background articles (available online as appendixes) and information
gathered at public meetings of parent and professional groups. The
committee also heard directly from parents about their experiences
caring for a dying child.
The report succeeds in documenting both the scientific and the
personal challenges involved in caring for children who die. Relevant
quotations from dying children, their parents, and their siblings
highlight the importance of topics ranging from communication and
goal setting to financial, legal, and ethical issues. This report
is not meant to be a clinical textbook, so the chapter entitled
"Care and Caring from Diagnosis through Death and Bereavement"
includes a descriptive outline of common physical symptoms encountered
in dying children, but it offers no treatment guidelines. Similarly,
the discussion of educating health care professionals features goals
and models for teaching palliative care, but not the specific content
of such education.
Throughout the book, the committee delineates action imperatives
based on its assessment of needs and current reality. An example
of the specificity of the recommendations is that public and private
insurers should restructure hospice benefits, allowing hospice teams
to care for children on the basis of diagnosis rather than prognosis,
even when a child is receiving potentially curative or life-prolonging
therapy. The committee advocates early involvement of an interdisciplinary
team to help families set goals for care and to coordinate care
across home and clinic and hospital settings.
The way a society treats its children mirrors its successes and
its failures. This book argues that it is imperative that knowledgeable
physicians and nurses assess and treat pain in nonverbal infants.
Is it any less important to treat pain in nonverbal elderly persons
who have Alzheimer's disease? It emphasizes the importance of supporting
the parents of a 4-year-old child with cancer, but is it any less
critical to care for the children of a 40-year-old adult with cancer?
It also criticizes a health care system in which 15 to 26 percent
of children have no insurance coverage, leaving families at risk
for financial devastation if serious illness occurs. Yet is it less
wrong when an elderly person's savings are wiped out because of
a life-threatening condition? In many ways, improving the care of
dying children in this country could have a substantially positive
effect on the care of dying adults. When Children Die advocates
the type of whole-person, whole-family care that many crave as they
near life's end. Its recommendations could lead the way to better
care, not only for affected children and their families, but for
all who must deal with life-threatening illnesses.
Kate W. Faulkner, M.D.
Kid Care Consultants
Dover, MA 02030
faulkner@massmed.org
N ENGL J MED 349; 15, www.nejm.org, October 9, 2003
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