RESOURCES TO DEVELOP AND ENHANCE PEDIATRIC PALLIATIVE CARE SERVICES

THE FACTS

  • The World Health Organization has affirmed that palliative care should be incorporated into the care of all children with cancer, irrespective of geographic location.
  • Pediatric palliative care is most successfully delivered using a multidisciplinary approach.
  • Most families prefer that their child be cared for at home. Therefore, pediatric palliative care requires a flexible, coordinated, multidisciplinary approach.
  • According to a recent sudy of children who die from cancer in England, 52% of children and adolescents and 30% of young adults die at home. This suggests that primary care and community services are critical to the provision of pediatric palliative care services.

References
WHO.Cancer Pain Relief and Palliative Care in Children, Geneva: WHO, 1998.
Higginson IJ, Thompson M. Children and young people who die from cancer. BMJ 2003; 327: 478-479.


US INITIATIVE FOR PEDIATRIC PALLIATIVE CARE (IPPC) SETS STRATEGY IN THE PROVISION OF SERVICES
The Initiative for Pediatric Palliative Care - a consortium of US organisations that work together to improve care and quality of life of children and families - offers interdisciplinary and interactive educational resources including small group learning activities, videos, and facilitator's guides. Print materials can be downloaded free of charge from their website at: http://www.ippcweb.org
The consortium seeks to enhance the capacity of children's hospitals and related institutions to accomplish the following:

  • maximize family involvement in decision making and care planning in the ways and to the degree that each individual family finds comfortable;
  • inform children with life-threatening illnesses and involve them in decisions regarding their care and care planning as fully as possible, given their developmental abilities and desires;
  • reduce pain and distressful symptoms for children with life-threatening illnesses;
  • provide emotional and spiritual support to children and families as they cope with the multiple losses associated with life-threatening conditions;
  • facilitate the resolution of families' practical needs, such as the need for respite, through coordination with the community;
  • facilitate continuity of care across care settings, both within and outside the hospital, by providing each family with a designated care coordinator;
  • offer bereavement support to the child and the family before and after death.

Reference
Solomon MZ, Dokken DL, Fleischman AR, Heller K, Levetown M, Rushton CH, Sellers DE, Truog RD. for IPPC, 2002. The initiative for pediatric palliative care (IPPC): Background and goals. Newton, MA: Education Development Center, Inc. Available at www.ippcweb.org

US LEGISLATURE PROPOSES POLICY TO IMPROVE PEDIATRIC PALLIATIVE CARE SERVICES
On September 17, 2003, legislation seeking to improve palliative and end-of-life care for children was introduced in both the US House and Senate. The Children's Compassionate Care Act (S. 1629) and the Pediatric Palliative Care Act (H.R. 3127) --identical in content-- would create pediatric palliative care demonstration projects and provide grants to expand services and research.
The demonstration projects would allow children to seek curative treatment while also receiving hospice and other palliative care services. They require coordination and continuity of care across inpatient, home and community-based settings and access to palliative care services, regardless of ability to pay.
The projects would also expand hospice eligibility by waiving the Medicare requirement that a patient must have a life expectancy of six months or less to qualify. Pediatric palliative care services and research grants outlined in the bill would be designated toward the development and implementation of clinical practice guidelines and protocols for pediatric, palliative, end-of-life, and bereavement care.
The proposed grants would also provide consultative services to health care providers to aid in the development of pediatric palliative care programs.
To view a summary, the full text and status information for either bill, enter the bill number at: http://thomas.loc.gov.

UK GUIDES TO PEDIATRIC PALLIATIVE CARE PUBLISHED
Association for Children with Life-threatening or Terminal Conditions & their Families (ACT) and Royal College of Pediatrics and Child Health. A Guide to the Development of Children's Palliative Care Services - Second edition, September 2003.
This new guide reflects recent changes in children's palliative care in the United Kingdom, in particular:
** Formal Recognition of Children's Palliative Care. Children's palliative care now has formal recognition from both the Royal College of Nursing and the Royal College of Paediatrics and Child Health and from the Department of Health.
** Epidemiology. Mortality and prevalence are much higher than was originally estimated.
** Community Care. Multi-disciplinary teams have been promoted in the new Guide as the model of care, reflecting the increased number of such teams now operating in the community.
** Children's Hospices. A significant increase in the number and role of children's hospices.
The guide is available online on the ACT website as a PDF file at: http://www.act.org.uk/

A second consensus document to consider evidence on the care of adolescents and young adults requiring palliative care was published jointly by ACT, the National Council for Hospice and Specialist Palliative Care Services, and the Scottish Partnership Agency for Palliative Care in September 2001. Entitled Palliative Care for young people aged 13-24 years. Joint Working Party, it is available online at: http://www.act.org.uk/

CHILDREN'S HOSPICE INTERNATIONAL PROPOSES MODELS IN THE PROVISION OF PEDIATRIC PALLIATIVE CARE
Children's Hospice International (CHI) is a US-based non-profit organization founded in1983 to promote hospice support through pediatric care facilities and provide community-based programs and resources for children with life-threatening conditions and their families.
CHI also provides education, training and technical assistance to healthcare professionals who care for this patient population.
Steps to develop a children's hospice, palliative care or end-of-life program are presented online at: http://www.chionline.org/resources/

  • The CHI Program for All-Inclusive Care for Children and Their Families (CHI PACC) is a model offering a comprehensive continuum of care for children with life-threatening conditions and their families from the time of diagnosis, with hope for cure, through bereavement if cure is not attained.
  • Families of children with life-threatening conditions are not forced to choose between curative care and hospice/palliative care, but instead the CHI PACC model allows palliative care to be offered along with disease treatment.
  • The CHI PACC model provides early and continual intervention and case management functions to prepare families and health care providers to provide support for the seriously ill child.
  • With respite care provided by the CHI PACC model, parents are able to continue functioning in the community.

An international directory of children's hospice, palliative and end-of-life programs and organizations can also be found on CHI's website at: http://www.chionline.org

US COALITION OFFERS PRECEPTS OF PALLIATIVE CARE FOR CHILDREN
Last Acts, a national coalition to improve care near the end of life in the US, has published Precepts of Palliative Care for Children, Adolescents and their Families in November 2003. This 4-page document provides a framework for delivering palliative care services to pediatric patients and their families.
The document can be used when creating pediatric palliative care programs or when training health care providers.
Developed by the National Association of Neonatal Nurses, the Society of Pediatric Nurses and the Association of Pediatric Oncology Nurses, it is available online at: http://www.lastacts.org/palliativecare.
Print copies can be requested from: lastacts@aol.com (insert "pediatric precepts" in the subject line.)

INTERNATIONAL SOCIETY FOR PAEDIATRIC ONCOLOGY (SIOP) ADOPTS GUIDELINES FOR STANDARDS OF TREATMENT & CARE IN CHILDHOOD CANCER
SIOP, the International Society for Paediatric Oncology, has adopted Guidelines for Standards of Treatment & Care in Childhood Cancer in September 2002, using the United Nations Convention for the Rights of the Child as its foundation.
The guidelines intend to assist health professionals who can make or advocate positive change to improve standards of treatment and care for children with cancer. The guidelines recognize the place of symptom control and palliative care in pediatric oncology.
The full text of the Guidelines is available online at: http://www.siop.nl/

CHILDREN'S INTERNATIONAL PROJECT ON PALLIATIVE/HOSPICE SERVICES (ChIPPS)
The Children's International Project on Palliative/Hospice Services is working to concretely enhance the science and practice of pediatric hospice and palliative care, and to increase the availability of state of the art services to families.
Several leaders in the field of pediatric palliative care worked collaboratively with the US National Hospice and Palliative Care Organization to develop the Children's International Project on Palliative/Hospice Services.
The project seeks to make the best-known practices in the field of pediatric palliative care more widely available to care providers.
Visit: http://www.nhpco.org/ to download the Strategic Planning Summary from ChIPPS Steering Committee Conference (February 2002.)