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Place of death shifting for children with complex chronic conditions

Contact: Rachel Salis-Silverman
JAMA and Archives Journals

It is becoming more common for children with complex chronic conditions to die in their home than in a hospital, although black and Hispanic children with these conditions are less likely to die in their home, according to a study in the June 27 issue of JAMA, a theme issue on chronic diseases of children.

Chris Feudtner, M.D., Ph.D., M.P.H., of Children’s Hospital of Philadelphia, presented the findings of the study at a JAMA media briefing in New York.

Many pediatric palliative care clinicians suggest that the preferred place of death, by the family, of an infant, child, or adolescent with a medically complex chronic condition is the home. Advances in home-based medical technology and changes in attitudes about pediatric palliative care and hospice services may be making this a more viable option, according to background information in the article.

Dr. Feudtner and colleagues conducted a study to determine if the proportion of complex chronic condition-related deaths occurring at home among children and adolescents increased between 1989 and 2003, and to assess if there were any race and ethnicity disparities in the location of death. The researchers analyzed data from the National Center for Health Statistics’ Multiple Cause of Death Files.

Among the 22.1 percent of deaths (198,160 of 896,509 total deaths) attributed to a complex chronic condition between 1989 and 2003, the percentage of deaths occurring at home increased significantly for all age groups (overall, from 10.1 percent in 1989 to 18.2 percent in 2003), but with larger increases for deaths beyond infancy. The odds of death occurring at home increased by 3.8 percent annually.

The percentage of individuals dying at home increased significantly over time for infants (4.9 percent home deaths in 1989 to 7.3 percent in 2003); 1 to 9-year-olds (17.9 percent to 30.7 percent), and 10 to 19-year-olds (18.4 percent to 32.2 percent). During this same period, there was a significant decline in the percentage of deaths occurring in the hospital for each of these three age categories.

The authors suggest that this gradual change in place of death may be occurring because of advances in medical technology in the home setting and broad shifts in attitudes and decision-making processes regarding palliative and end-of-life care in U.S. culture.

The child’s race, ethnicity, and region of home residence were significantly associated with death occurring at home. The odds of dying at home were reduced by 50 percent among black individuals, and reduced by 48 percent among Hispanic individuals, when compared with whites.

Concerning possible reasons for the observed racial and ethnic differences, “ … differential access to health care services or medical technology, divergent cultural attitudes or approaches to palliative and end-of-life care decision making, or differing levels of financial or other support within the patient’s or family’s social network may make dying at home more or less likely.”

“… as efforts to improve understanding of the sources and remedies of racial and ethnic disparities in pediatric end-of-life care are completed, medical and other concerned professionals need to ensure that all patients have access to necessary care and that all dialogue and interactions regarding decisions about care—whether curative, life-extending, or palliative—are built on mutual understanding, trust, and respect,” the authors conclude.

(JAMA. 2007;297:2725-2732. Available pre-embargo to the media at

Editor’s Note: The conduct of this study was supported in part by grants from the Agency for Healthcare Research and Quality and the National Institute of Nursing Research of the National Institutes of Health. Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, etc.

For More Information: Contact the JAMA/Archives Media Relations Department at 312-464-JAMA or email:

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June 27, 2007 Posted by | Alberta, Baltimore, Bethesda, Calgary, Cancer, Chronic, Chronic Multisymptom Illnesses, Complex Chronic Conditions, End Of Life Care, Global, Global Health Vision, Global News, JAMA, Medical Journals, News, News Australia, News Canada, News Israel, News Jerusalem, News UK, News US, NIH, Palliative Care, Pediatric Palliative Care, Research, Virginia, WASHINGTON, Washington DC, World News | Leave a comment

Chronic Multisymptom Illnesses, one battle on many fronts.

My good friend Jeanne Hambleton, a journalist and advicate from the UK, has asked me to contribute an article for her upcoming book, Pain 24/7 – To publish a self help FMS book 12/05/2007

Jeanne’s book is being written to raise severly needed research funds into Fibromyalgia, Chronic Fatigue Stndrome, M.E. and is a vital part of moving forward with research into these illnesses.

Please if you can, contribute to the book project by visiting this link:
as your donation no matter what size it is, will help bring this vitally important book into existance, hopefully on schedule.The need is urgent and the time to act is now.

Jeanne asked me write an article called three illnesses, one battle, but I did take the liberty with her permission to include “Chronic Multisympton Illnesses” in general, and how this is several illnesses being fought on many fronts.

Chronic Multisymptom illnesses (CMI) come in a number of forms, ranging from “Fibromyalgia”, “Chronic Fatigue Syndrome, M.E.”, and “Gulf War Syndrome.”, simply to name the more common and widely recognized ones.

Each of these illnesses faces one common challenge in the medical community. A severe lack of research funding. In spite of the lack of funding we have begun to learn a great deal about some of these illnesses, however the funding is scant at best when it comes to developing these discoveries into usable treatments.

One area we severly need improvement on is in Physician Education. Many Physicians, and these are good Doctors, simply have not taken the time to read the latest clinical research results. They were trained at a time when these illnesses were thought to be some form of somataform illness or psychiatric disorder and unfortunately so many of them are still under the beliefe that this is the case. To quote a favorite phrase used in psychotherapy, “denial is not a river.”

We severly need all Medical Professionals to be on the same page when it comes to understanding these illnesses. It is the simple way out to to deny these illnesses are legitimate in nature and dismiss them as such when the current medical facts are far from that common misconception. It creates a situation where many learned medical professionals appear as if they simply do not understand these mechanisms, nor do they want to, and it is creating a situation where many suffer needlessly as a result.

I strongly urge the medical community to look at the facts. If one is not part of the solution, one becomes part of the problem. One of the main area’s where a lack of Physician Education has taken it’s toll is in Canada. Most Canadian Physicians simply don’t know how to diagnose or treat these illnesses. As a result the Statistics Canada data on these illnnesses is severly flawed. This fatal flaw affects research funding in a very negative way.

I am calling for the Medical Community to come together and formulate a plan to make Physician Education into these illnesses a major priority.
I will do my part to help make this happen and work with as many Clinical Researchers as I can to help develop this vital information.

The time to create change is now so that we can move forward and find viable treatments that can restore the sufferer’s of these illnesses to some kind of reasonable quality of life. The refusal to do so or denial of these illnesses is neglegent, and neglegence is not in anyones best interest, it does not serve the best interest of the patient, neither does it serve the best interest of the Physician. The evidence is there and we must act upon it. The Physicians oath to “do no harm” is poorly served by dismissing these illnesses based on information that is decades outdated.

I plan to work with many of the top Clinical Reachers in these fields to improve Physician Understanding and Awareness in the coming months and cannot understate the importance of the work that lies ahead of us all.

Each of us has a responsability to learn as much as we can to bring these illnesses into a managable modality that will improve the quality of life for these patients.


Richard L. Usher


FMS Global News

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May 13, 2007 Posted by | Chronic Multisymptom Illnesses, Clinical Trials, Global, Global Health Vision, Global News, News, University of Michigan | Leave a comment