Palliative Care for Children
This will be the page to provide details about the urgent need for palliative life certification for all pediatric health care workers. This area is very important since it is probably an area where the advancement of palliative life care is years behind in progress--despite the profound need for it in this area. Information is being collected to start this content from published journal articles.
"At present, only about 5000 of the 53,000 children dying each year receive hospice services, indicating that the vast majority of children who might benefit from palliative care and hospice services are not being reached." --Karen Moody, MD, MS, Linda Siegel, MD, Kathryn Scharbach, MD, Leslie Cunningham, PhD
The above is from the review article "Pediatric palliative care." [Prim Care. 2011 Jun;38(2):327-61. PubMed]
"Despite more than 30 years of an organized, regulated, and government-financed system for providing hospice care to adults in the United States, the care of children with terminal or life-threatening illnesses remains woefully inadequate. Lack of access to services, ignorance on the part of health care professionals, and a Byzantine health care financing system all contribute to needless suffering for children who, though beyond the reach of curative medicine, still deserve to live out their days in comfort, in the company of family, and with the support of a health care team." --Susan K. Rogers, MS, BSN, CHPN, et al
The above statement is from the article "Quality of Life for Children With Life-Limiting and Life-Threatening Illnesses: Description and Evaluation of a Regional, Collaborative Model for Pediatric Palliative Care. Am J Hosp Palliat Care 2010. Sep 8. Within this article, the following statements were made "The model we developed assumes that the resources necessary to provide state-of-the art palliative care exist in this country. In other words, the deficiencies that exist are not the result of inadequate technology, lack of knowledge, or unanswered questions about the need for pediatric palliative care services. Indeed, any region of the country with basic health care delivery systems for children is capable of providing palliative care." It is true that the resources of technology and staff do exist, but the lack of palliative life knowledge amongst health care workers is the underlying problem with health care throughout the world. Although all are capable of becoming certified in palliative life care, only 1% of the 2.9 million registered nurses and 0.3% of the 954,000 physicians in the USA are certified in palliative care medicine or hospice. And even though many people profess that palliative care services are available on a widespread basis in the USA--they are not being utilized (and are not adequately funded). The goal should be to fast track all heath care workers with palliative life certification.
"An estimated 50 000 children in the United States die annually from a variety of conditions and an additional 500,000 children are coping with lifelimiting conditions expected to lead to premature death." --Caprice A. Knapp, PhD, Lindsay A. Thompson, MD, MS, W. Bruce Vogel, PhD, Vanessa L. Madden, BSc, and Elizabeth A. Shenkman, PhD
The above statement is from the article "Developing a Pediatric Palliative Care Program: Addressing the Lack of Baseline Expenditure Information." [Am J Hosp Palliat Care. 2009 Feb-Mar;26(1):40-6. PubMed] One of the remarks made in the conclusion of the article is "Our findings also suggest that many more children could potentially benefit by using hospice care at the end of life." In this Florida study, the last year of life costs averaged $110,000 for infants and $62,000 for children. But of the 1431 children who died in the 3-year study period "About 5% of infants and 8% of children incurred hospice expenditures." And this is one of the first states where a non-private pediatric palliative care program started, as was noted that "In 2005, Florida became the first state in the United States to design and implement a publicly subsidized pediatric palliative care program that provides palliative care to infants and children throughout the course of illness."
The chief investigator in the above study, Dr. Caprice Knapp, has done a number of other worthy studies in pediatric palliative care that are worth mentioning. For instance, she was involved in a survey study titled "Pediatricians' perceptions of and preferred timing for pediatric palliative care." [Pediatrics. 2009 May;123(5):e777-82 PubMed] The purpose of the study was "...to find out how pediatricians define palliative care and their preferences regarding the timing of referrals for children with life-limiting diseases." The survey was "A random sample of 800 pediatricians in Florida and California received mail and online surveys." The conclusion: "Despite recommendations to refer children to palliative care early in the course of illness, most pediatricians define palliative care as similar to hospice care and refer patients once curative therapy is no longer an option. Creating a more-practical definition of care, one that emphasizes an array of services throughout the course of an illness, as opposed to hospice care, may increase earlier palliative care referrals for children with life-limiting illnesses."
In another published study titled "Effect of a pediatric palliative care program on nurses' referral preferences" [J Palliat Med.2009 Dec;12(12):1131-6. PubMed] Dr. Knapp found that "Our study provides evidence that nurses who have experience with a pediatric palliative care program are more likely to refer children to programs before the end of life."
One other study to mention that was published by Dr. Knapp is titled "Paediatric nurses' knowledge of palliative care in Florida: a quantitative study." [Int J Palliat Nurs.2009 Sep;15(9):432-9. PubMed] In this study, Dr. Knapp found that "Multivariate analyses show that receiving formal palliative care training and having worked at a hospice were associated with greater knowledge. Paediatric nurses in Florida have a good level of baseline knowledge of palliative care. Nurses' training programs should be used to increase knowledge, which may subsequently lead to more referrals."
Similar results as those revealed above are found in palliative care centers and with nurses who have hospice experience. The number of referrals to palliative care and hospice will increase substantially when all health care workers become certified in palliative life care.
In 2002, the Institute of Medicine published an important investigative report called "When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families." The following is a summary of this report, which can be purchased for $35 or read online.
Key messages of this report include:
- Too often, children who die and their families fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs.
- Current methods of organizing and financing palliative, end-of-life, and bereavement care compromise the provision and coordination of the best mix of services to help children and families and sometimes present families with cruel choices between curative or life-prolonging care and certain palliative services, in particular, hospice care.
- Better care is possible now, but we also need better data and scientific knowledge to guide efforts to deliver more effective care, educate professionals to provide such care, and design supportive public policies.
- Improving care for children who die and their families should help improve care for all children and families facing a child's life-threatening medical condition.
And 8 years after this 671 page report was released, the same situation exists in pediatric medicine--simply because all health care providers are not required to become certified in palliative life care. On page 337 of this report there is a statement that "Several organizations offer training and certification, but as yet, no generally accepted national standards for training exist." No official national standards for palliative life training exist--even 8 years following this report!