RESOURCES FOR PAIN CONTROL
AND PALLIATIVE CARE IN CHILDREN
This section presents recently released print and internet based resources for health
professionals concerned about improving pain management in seriously ill children around
the world.
ORGANIZATION OF SERVICES
Armstrong-Dailey A, Zarbock Goltzer G. Hospice Care for
Children. Second edition. Oxford University Press, 2001. Children with life-threatening and terminal illnesses -and their families-
require a unique kind of care to meet a wide variety of needs. This book, the first
edition of which won the 1993 Pediatric Nursing Book of the Year Award, provides an
authoritative source for people involved in caring for dying children. The book is
intended for all those who participate in the hospice-care process: physicians, nurses,
social workers, teachers, clergy, family therapists, parents, and community service
volunteers. Cost: $ 45.00. For a detailed table of contents, and ordering information, go
to: http://www.oup-usa.org/toc/tc_0195133307.html
Levetown M (primary editor) and the Children's International Project on
Palliative/Hospice Services. Compendium of Pediatric Palliative Care. Alexandria,
VA: NHPCO, 2000.
This compendium, released by the National Hospice and Palliative Care Organization
(NHPCO), is a comprehensive reference on best practices in pediatric palliative care with
examples from Canada, Australia, Greece, Poland and the US. The compendium is divided into
four sections: pediatric palliative care services; communication, ethics and
decision-making; management of pain and other symptoms; psychosocial and spiritual care of
children living with life-threatening conditions. To order, call NHPCO at 1-800-646-6460
or 1-703-837-1500. Cost: $129.95. To order online, go to: http://www.nhpco.org
POLICY RECOMMENDATIONS
American Pain Society. Position Statement on Pediatric Chronic Pain.
January 2001
This statement addresses the definition of chronic pain in children, as well as
assessment, treatment, research and policy issues in pediatric pain management. To
effectively treat chronic pain, its physical and psychological manifestations must be
viewed together. To separate the two can lead to inappropriate investigations, procedures
and interventions. The statement says an evaluation of pediatric chronic pain should
include: (1) A history of the present problem, including a detailed description of the
pain detailing onset, development, intensity, duration, location, exacerbating and
alleviating factors, and impact on daily life (such as sleeping, eating, school and social
interactions); (2) Determination of the level of distress the child and family experience
from the pain, including feelings of anxiety, depression and hopelessness; (3) Assessment
of the child and family's perception of the pain's cause and their response to it; (4) A
review of past pain problems in the family and current treatments for the child's pain,
including home remedies and alternative treatments; (5) Observation of the child's general
appearance, posture, gait, and emotional and cognitive state; (6)Assessment of muscle
spasms, trigger points, and areas sensitive to light touch; and (7) A complete
neurological examination. The complete statement is available online at: http://www.ampainsoc.org/advocacy/pediatric.htm
or by calling 1-847-375-4715.
American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital
Care. Palliative Care for Children. Pediatrics 2000; 106 (2): 351-357.
This statement presents an integrated model for providing palliative care for children
living with a life-threatening or terminal condition. Advice on the development of a
palliative care plan and on working with parents and children is also provided. Barriers
to the provision of effective pediatric palliative care and potential solutions are
identified. The Academy recommends the development and broad availability of pediatric
palliative care services based on child-specific guidelines and standards. Such services
will require widely distributed and effective palliative care education of pediatric
health care professionals. The Academy offers guidance on responding to requests for
hastening death, but does not support the practice of physician-assisted suicide or
euthanasia for children. Available online at: http://www.aap.org/policy/re0007.html
Jankovic M, Van Dongen-Melman JE, Vasilatou-Kosmidis H, Jenney ME. Improving the
quality of life for children with cancer. European School of Oncology Advisory Group. Tumori
1999;85(4):273-279.
There are more than one million new cases of cancer every year in the European Community
(EC) including children with particular needs. Besides disease-free survival, other
outcomes reflecting the impact of treatment on the patient and their families must also be
assessed and include their physical, psychological and social functioning throughout their
care: during therapy, after completion of treatment or, for some, in the terminal phase of
their illness. To provide optimal care and thus improve the quality of life for these
children requires: a) an appropriately structured Pediatric Cancer Unit; b) well trained
and permanent staff members: comprising doctors, nurses, psychologists, social workers and
other health care professionals; c) facilities such as a specific out-patient clinic, a
hospital school, a residence for parents; d) a well-defined programme for the terminally
ill children; e) a well-defined programme for controlling the late effects of therapy.
Masera G, Spinetta JJ, Jankovic M, et al. Guidelines for assistance to
terminally ill children with cancer: A report of the SIOP Working Committee on
psychosocial issues in pediatric oncology. Med Pediatr Oncol 1999; 32: 44-48.
This sixth official document of the SIOP Working Committee on psychosocial issues in
pediatric oncology develops another important and especially difficult topic: assistance
for terminally ill children with cancer. This is provided for the pediatric oncology
community as a useful set of guidelines. It should be always possible for a declining
child to die without unnecessary physical pain, fear, or anxiety. It is essential that he
or she receive adequate medical, spiritual, and psychological support, and that the child
at no point feels abandoned. Palliative care, in the terminal phase of cancer, should be
tailored to the different needs and desires of the child and the family, with the goal of
providing the best possible quality of life for the days that remain.
PROFESSIONAL EDUCATION
Pediadol
This French-language database, managed by the ATDE (Association for the dissemination of
information on pain control in children) with funds from the French Ministry of Health, is
focused exclusively on pediatric pain resources for health professionals. The website
includes 2800 bibliographic references, including abstracts of journal articles and
conference presentations. The site is updated regularly. Visit: http://www.pediadol.org/
Apples and Oranges: Sorting out Pain with Kids
Since 1998 this University of Iowa website is a useful resource for the management of
pediatric cancer pain. With funding from the nonprofit organization Advocates for
Children's Pain Relief, a new server makes 1,400 pages of information available for
patients, families, and health care professionals. http://www.nursing.uiowa.edu/sites/pedspain/resources/kids.htm
ACT (Association for Children with Life-threatening or Terminal conditions)
This organization works to improve care and services for all children in the UK with
life-threatening or terminal conditions and their families. The ACT website is host to the
International Network for Palliative Care for Children (INPCC) formed in 2000. The network
provides an international forum for pediatric professionals to exchange news, views and
information and enables those working in this field to learn and work more effectively
with children and their families. For more information, visit: http://www.act.org.uk/actwebnew/login.htm
World Health Organization. Cancer Pain Relief and Palliative Care in
Children. Geneva: Switzerland: WHO, 1998.
This volume details the use of appropriate analgesic drugs and adjuvants for the relief of
other symptoms related to cancer or its treatment. Emphasis is on a holistic approach,
with management of pain undertaken as part of comprehensive palliative care. The book also
addresses education of health-care workers, public awareness of the special problems of
children with cancer, and regulations governing the distribution and prescription of
opioid analgesics. Full text edition available online at: http://www.nursing.uiowa.edu/sites/PedsPain/Benini/Pain_Final.htm
and http://www.stoppain.org/for_professionals/cancerbk.pdf
