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May 2003

ChiPPS Newsletter May 2003

Hello again! We are happy to be sending our third ChiPPS newsletter. Thanks to those of you who have sent in comments about the newsletter. We appreciate your input and your interest. 

Since we last communicated, NHPCO held its 4th Joint Clinical Conference, featuring a Pre-Conference Institute focused on “Essentials of Pediatric Palliative Care.” We%27ll tell you a bit about the conference in this newsletter.  We also will introduce you to the rest of the ChiPPS Executive Committee and, as promised, will provide a summary of the NHPCO survey on pediatric palliative care.   

1. The 4th Joint Clinical Conference

In April, NHPCO hosted the fourth annual Joint Clinical Conference in Denver, CO. For the first time in NHPCO%27s history, it was possible for conference participants to attend a pediatric-focused presentation during every breakout session. Nine pediatric sessions were scheduled this year!

The Joint Clinical Conference began on April 9, 2003 with a pre-conference entitled “Essentials of Pediatric Palliative Care.” More than 70 professionals attended this full day of training. Faculty included Chuck Corr, Ph.D., Jeanne Lewandowski, M.D., Stacy Orloff, Ed. D., and Liz Sumner, R.N. The faculty was proud to introduce NHPCO%27s newest publication, The Education and Training Curriculum for Pediatric Palliative Care, written by the ChiPPS Education Work Group. Each faculty member taught from a portion of the various modules in the new curriculum. When one faculty member announced that the curriculum was for sale and that there was a pediatric palliative care conference track, the attendees broke out in spontaneous applause! By all accounts, the pre-con and the conference were a fabulous success.

2. Introducing the Rest of the ChiPPS Executive Committee

Paul Brenner, M.Div., presently works for Children%27s Hospice International and is responsible for implementing the Program for All-inclusive Care for Children and Their Families. He has served on the staff of hospice programs in Florida, Washington, DC, and New York City. He has been active with the Florida, Maryland, and New York Hospice and Palliative Care Associations, NHPCO, The Foundation for Hospices in sub-Saharan Africa, and the National Hospice Work Group.  A member of one of the ChiPPS working groups, Paul enjoys the collaborative model of ChiPPS as a means for advancing the field of pediatric palliative care.

Joanne Hilden, M.D., a pediatric oncologist, is chair of the department of pediatric hematology/oncology and medical director of pediatric palliative care at The Children%27s Hospital at The Cleveland Clinic. She co-founded and co-chairs the Children%27s Oncology Group Subcommittee on Palliative Care in the interest of facilitating multi-institution trials in pediatric palliative care. Having taken on advocacy work first with the National Cancer Policy Board and then the Institute of Medicine Committee on the Care of Children with Life-Threatening Conditions, she feels that ChiPPS should have an interdisciplinary voice and a national audience so that advocacy for change can continue. 

Sue Huff, R.N., M.S.N., is the director of the Essential Care Program, in Buffalo, NY, a pediatric program offering palliative care services to children since 1988.  She is the project director of NYS PACC Demonstration Grant and developed the NYS Advisory Group for Pediatric Hospice and Palliative Care.  She is interested in palliative care research, education, and ever-evolving program development and sees ChiPPS as a vehicle for facilitating these interests.  

Marcia Lattanzi-Licht, M.A., R.N., L.P.C., as a licensed counselor, has maintained a private psychotherapy practice for more than fifteen years, and is currently the principal investigator in the Colorado Bereavement Services Project, studying bereavement risk assessment and outcomes. She is an internationally known educator and speaker. An early voice for hospice care, Marcia was a co-founder of Hospice of Boulder County, Colorado, and the originator and director of its nationally recognized education and bereavement programs. She is the principal author of The Hospice Choice: In Pursuit of a Peaceful Death (1998).

Jeanne Lewandowski, M.D., is the inpatient pediatric medical director for Hospice of Michigan (since 1991) and pediatric medical director for the Hospices of Henry Ford. Working with the Michigan Hospice and Palliative Care Organization, Jeanne is participating in a statewide coalition of health systems, providers, and payers working toward improved access, service, and reimbursement for pediatric palliative care. She actively advocates for regulatory and legislative changes in Michigan to improve pain management and end-of-life care for children and adults and hopes to use her advocacy skills to assist ChiPPS in meeting its goals.

Marcia Levetown, M.D., trained as a pediatric critical care physician, saw the need to introduce palliative care principles into the care of all children, particularly in the ICU setting. Since she had a difficult time accessing the expertise of those who had pioneered palliative care for children around the world and in the United States, Marcia developed the idea of the Children%27s International Project on Palliative/Hospice Services (ChiPPS) to make this expertise more accessible and to further the field through collaboration. Marcia has been a tireless advocate for this cause, serving on important committees for the American Academy of Pediatrics, American Board of Pediatrics, and the Institute of Medicine.

Fil Nalewajek, R.N., M.N., is director of programs and services at Canuck Place Children%27s Hospice in Vancouver, British Columbia, Canada. Canuck Place, which has been in operation for seven years, is the only freestanding children%27s hospice in North America. Serving 210 children and families in the program currently, Canuck Place offers a range of services, including respite, symptom management, end-of-life care, and bereavement. She brings a Canadian perspective to ChiPPS discussions as well as taking ideas back to her Canadian colleagues for further collaboration at the international level.

Barbara Sourkes, Ph.D., a pediatric psychologist, is the first Kriewall-Haehl Director of the pediatric palliative care program at Lucile Packard Children%27s Hospital at Stanford, and associate professor of pediatrics and psychiatry at Stanford University. She was previously at the Montreal Children%27s Hospital and McGill University. The interdisciplinary nature of ChiPPS from its very inception is what she most appreciates—diverse perspectives all.

3. NHPCO Member Survey on Pediatric Palliative Care

At the end of 2002, NHPCO surveyed its members to assess the availability of pediatric palliative care within the hospice system nationwide. The baseline survey found that NHPCO members are expanding services to include care for children with life-threatening conditions.

The pediatric palliative care survey helps us understand that NHPCO members consider this area of care to be of great importance. This survey confirms that there continue to be challenges to providing pediatric palliative care.

Over half (51 percent) of the 520 respondents reported that they always accept pediatric patients, while 35 percent do so on a case-by-case basis. Fourteen percent reported that they have never admitted pediatric patients. Even still, 70 percent of the respondents indicated that they do not have a pediatric palliative care program. Of the pediatric patients accepted by the respondents%27 programs, 72 percent were admitted through hospice programs and 28 percent were admitted through home care. Respondents indicated that they cared for a range of children%27s age groups.

According to the survey, the average length of stay for pediatric patients is 84 days, while the median length of stay is 66 days. These statistics reflect that children in hospice care stay significantly longer than adult patients. This fact brings to bear the question of financing care for pediatric patients, who require greater and more sustained support from the hospice system.

Eighteen percent of respondents said that they declined admission to pediatric patients in the last year. Forty percent of these survey respondents reported that the greatest reason for not admitting pediatric patients to their programs was the lack of referrals. Other reasons for not accepting pediatric patients included lack of pediatric care experience among staff members (20 percent), the patient/family resided outside of service area (14 percent), unfamiliarity with clinical diagnosis of pediatric patients (13 percent), child%27s prognoses does not meet requirement for hospice enrollment (10 percent), and complexity of child%27s clinical symptoms/treatments (10 percent).

The greatest barrier to caring for pediatric palliative care patients is limited expertise among patient care staff (50 percent), according to the respondents. The second barrier is hesitancy for physicians to refer the child to pediatric palliative care (39 percent). The third is that the medical director or doctor overseeing the case is not experienced in pediatric pathology and symptom management (17 percent).

The good news from this survey is that the overwhelming majority (90 percent) of respondents would be willing to care for pediatric patients, given training or preparation.  To enhance their ability to offer this care, the respondents asked that certain pediatric issues be addressed by NHPCO, including pain and symptom management for children (79 percent), training in psychosocial assessment of children (65 percent), training in physical assessment of infants and children (67 percent), psychotropic medication for children (55 percent), grief associated with the death of a child (54 percent), and quality palliative care in the home (51 percent).

ChiPPS/NHPCO is committed to equipping members to expand care to pediatric patients.  As stated above, we featured a daylong pre-conference session, Essentials of Pediatric Palliative Care, on April 9, 2003 before JCC. The conference also included a concurrent session track dedicated to pediatric palliative care.  In 2001, we published the Compendium of Pediatric Palliative Care (2001), and, at the Joint Conference in April, we released the Education and Training Curriculum for Pediatric Palliative Care.

For more information on the Pediatric Palliative Care Survey, contact Stephen Connor at sconnor@nhpco.org or 703/837-3149. The survey results are also posted on the NHPCO Web site.

That%27s all for now.  Look for the next newsletter in the summer!  And, as always, if you have information to share, questions, or any input … please let us know!

Happy Spring!