Mission: Possible
About Children’s Hospice and Palliative Care Coalition
What is Children’s Hospice & Palliative Care Coalition?
Founded in 2001 by Lori Butterworth and Devon Dabbs, Children’s Hospice & Palliative Care Coalition is a social movement led by children’s hospitals, hospices, home health and grassroots agencies, and individuals to improve care for children with life-threatening conditions and their families. In January 2005, after 3 years of intense advocacy on behalf of children with life-threatening conditions, Children’s Hospice & Palliative Care Coalition successfully convinced the Schwarzenegger administration to initiate policy changes, which will expand Medi-Cal reimbursement for palliative and end-of-life care when the patient is a child. The administration is currently consulting with the Coalition on developing and implementing the policy changes including a children’s hospice eligibility waiver mandated by the Nick Snow Act of 2006.
What does the Nick Snow Act do?
The Children’s Hospice and Palliative Care waiver program mandated by the Nick Snow Act is a pilot program that will begin in early 2009 in Santa Cruz, Monterey, San Diego, Alameda and Santa Clara Counties. In 2010, six additional counties will be added: Humboldt, Marin, Orange, Sacramento, San Francisco and Sonoma. In 2011, Fresno and Los Angeles Counties will be added. Our goal is for a state-wide benefit once the three-year pilot project is successful.
What does Children’s Hospice & Palliative Care Coalition do?
The Coalition serves as a reminder that children are not little adults and when they are seriously ill, their medical and emotional needs areunique and must be honored within the medical system. Children’s Hospice & Palliative Care Coalition provides training and support to hospice teams across the state so that when they are caring for a dying child they are able to meet the medical, emotional and spiritual needs of the child and the family. We also work with children’s hospitals, home health agencies, hospices and community- based organizations and the State of California to promote policies and all-inclusive care programs that meet the complex medical, emotional, social, and practical needs of families who are experiencing great loss.
Why would a child need hospice and palliative care?
Hospice is not a “place”, rather it is a philosophy of care that addresses the medical, psychosocial, emotional, and spiritual needs of the child and their family. We believe that this care should be available at the time of diagnosis, continue throughout the course of treatment and later guide the family as they transition back into a “normal” life if the child recovers or through their grief if the child dies. By having the emotional, psychosocial and spiritual care available in the beginning, we can help prevent some of the unnecessary pain caused by undue stress, anxiety and fear.
Why don’t children usually get hospice care?
Very few children receive hospice care because in order to qualify for hospice care under the current system their parents and their doctor must state that the child has only six months to live and the child must stop all treatment to cure their disease.
These eligibility requirements take an “all or nothing” approach either - “we are trying for a cure” or “we are managing pain.” This unnecessary split causes heartache, confusion, anxiety and stress among medical professionals, caregivers and families and ultimately compromises care. It is Children’s Hospice’s position and the position of other experts, including the Institute of Medicine and the American Academy of Pediatrics, that it is inhumane to ask a parent to give up hope for curing their child in order to receive the compassionate support offered by hospice and palliative care.
Isn’t this really expensive? Who’s going to pay for all these services?
Studies have indicated that by providing children and their families with strong emotional, spiritual and psychosocial support and adequate pain management – or in other words hospice and palliative care - from the very beginning, children would have a much better chance of survival, families would experience less trauma and it would cost no more money – it might actually save money. By expanding the family support network and strengthening communication among all those who are caring for the child including the specialty hospitals, we will reduce confusion and strengthen caregivers, prevent unnecessary emergency room visits and ensure that the family has a local support team to care for them.
How can the hospice eligibility requirements be eliminated?
The hospice eligibility requirements are federal but the State of California can waive the requirements by submitting a waiver through our Department of Health. Florida and Colorado recently did just that and other states are hoping to submit a waiver in the near future. Children’s Hospice & Palliative Care Coalition is working with the State Department of Health to draft and submit a federal waiver which will eliminate the hospice eligibility requirements when the patient is a child, so that children and their families are not prevented from receiving hospice and palliative care when they need it. The waiver will be implemented in pilot sites around the state beginning in 2008.
Coalition Members and Partners
Children’s Hospice and Palliative Care Coalition has more than 1,000 members nationwide. You can join this powerful group and become part of the grassroots movement to improve care for children and their families.
Organizations:
California Children’s Hospital Association
California Children’s Services
Children’s Specialty Care Coalition
California Association for Health Services at Home
California Hospice & Palliative Care Association
Childrens Hospital Los Angeles
Children’s Hospital of Orange County
Hospice Caring Project of Santa Cruz County
Pediatric End-of-Life Nursing Education Consortium
Central Coast Visiting Nurses Association
Initiative for Pediatric Palliative Care
Lucile Packard Children’s Hospital at Stanford
Pathways Home Health and Hospice
Rallying Points and Last Act Partnership
George Mark Children’s House, San Leandro
Jacob’s Heart Children’s Cancer Association
University of California at Irvine Medical Center
University of California at Davis Medical Center
University of California at San Francisco Medical Center
Trinity Kids Care Hospice, Torrance, CA
Individuals:
Sally Adelus, RN, DNSc
Executive Director
Hospice of the Valley
San Jose, CA
sadelus@hospicevalley.org
Clarke Anderson, MD
Dept. of Pediatric Hematology/Oncology
City of Hope National Medical Center and Beckman Research Institute
Duarte, CA
canderson@coh.org
Trudy Anderson
Director of Nursing
Hospice of the Valley
San Jose, CA
tanderson@hospicevalley.org
Jaime Andrews, RN
Pediatric Nurse
Cedars-Sinai Medical Center
Los Angeles, CA
jandrews08@yahoo.com
JoAnne Auger, RN
Supportive/Palliative Care RN Coordinator, Oncology
Children’s Hospital San Diego
San Diego, CA
jauger@rhcsd.org
Silvia Austerlic
Latino Community Liaison
Hospice Caring Project, Mensajeros de Confianza
Scotts Valley, CA
sausterlic@hospicesantacruz.org
Barbara Beach, MD
Medical Director
George Mark Children’s House/Comfort for Kids
San Leandro, CA
bbeach@georgemark.org
Christy Beaudin, Ph.D., LCSW, CPHQ
Vice President, Chief Quality Officer
Children’s Hospital Los Angeles
Los Angeles, CA
CBeaudin@chla.usc.org
Marsha Blachman, LCSW
Manager, Psycho-Social Services
George Mark Children’s House
San Leandro, CA
mblachman@georgemark.org
Kim Bower, MD
Medical Director
San Diego Hospice and Palliative Care
San Diego, CA
kbower@sdhospice.org
Barbara Britt, RN, MSN
Nurse Care Manager
Neural Tumors Program, Children’s Hospital Los Angeles
Los Angeles, CA
BBritt@chla.usc.org
Alison Brooks, RN, MSN, CNS
Alta Bates Summit Medical Center
Berkeley, CA
brooka@sutterhealth.org
Ellen Brown, MD
Medical Director
Pathways Kids
Sunnyvale, CA
ebrown@pathwayshealth.org
Lori Butterworth
Co-Executive Director and Co-Founder
Children’s Hospice and Palliative Care Coalition
Watsonville, CA
lori@childrenshospice.org
Rebecca Case, RN
Clinical Resource Nurse
UC Davis Medical Center, Pediatric Intensive Care Unit
Davis, CA
rebecca.case@ucdmc.ucdavis.edu
Erin Champion
Manager
Care-A-Van for Kids, Lucile Packard Children’s Hospital
Palo Alto, CA
echampion@lpch.org
Anne Marie Cheney, RN
Admissions Nurse
Heartland Hospice Santa Rosa
Santa Rosa, CA
amcheney@earthlink.net
Judy Citko, JD
Executive Director
California Coalition for Compassionate Care
Sacramento, CA
jcitko@finalchoices.org
Holly Clark
Outreach Coordinator
Make-A-Wish
San Francisco, CA
hclark@makewish.org
Jessica Corona
Transportation Coordinator / Database Management
American Red Cross, Santa Cruz County Chapter
Santa Cruz, CA
jcorona@scredcross.org
Devon Dabbs
Co-Executive Director and Co-Founder
Children’s Hospice & Palliative Care Coalition
devon@childrenshospice.org
Rowena DeMayo, RN, MSN
Primary Care
Hospice by the Bay
San Francisco, CA
rowenademayo@hotmail.com
Meghan Denzel, RN, FNP
Hospice Case Manager
Pathways Kids
Mountain View, CA
mmdenzel@hotmail.com
Joyce Derrickson
Nurse Care Manager, Neural Tumors Program
Children’s Hospital Los Angeles
Los Angeles, CA
jderrickson@chla.usl.org
Jacqueline Drummond-Lewis, MD
Children’s Hospital Los Angeles
Los Angeles, CA
JDrummondLewis@chla.usc.edu
Tree Dunbar, RN
Director of Children’s Services
Hospice Caring Project
Scotts Valley, CA
tdunbar@hospicesantacruz.org
Judith Dunlop, MDiv
Program Director
George Mark Children’s House
San Leandro, CA
jdunlop@georgemark.org
Deborah Dunne
Chief Administrative Officer, VP Clinical Services
San Diego Hospice and Palliative Care
San Diego, CA
DDunne@SDHospice.org
Suzanne Engelder, MSW
Program Coordinator/Social Worker
St. Joseph Perinatal Comfort Care Program Community Education/St. Joseph Hospice
Orange, CA
Suzanne.Engelder@stjoe.org
Elana Evan, PhD
Clinical Psychologist/Program Coordinator,
Children’s Comfort Care Resource Program, UCLA Pediatric Pain Program
Los Angeles, CA
eevan@mednet.ucla.edu
Barbara Flynn, RN
Health Services Director
Central Coast Alliance For Health
Scotts Valley, CA
bflynn@ccah-alliance.org
Jennifer Foreman, MD
Chief, Ambulatory Pediatrics
Santa Clara Valley Health & Hospital System
San Jose, CA
jennifer.foreman@hhs.co.santa-clara.ca.us
Heather Fox, LCSW
Clinical Social Worker
Children’s Hospital Oakland
Oakland, CA
hfox@mail.cho.org
Lorry Frankel, MD, MBA
Director of Critical Care
Lucile Packard Children’s Hospital at Stanford
Palo Alto, California
lrf@stanford.edu
Alice Fritz, RN, MS
Care Coordinator
George Mark Children’s House
San Leandro, CA
afritz@georgemark.org
Gay Gale, RN, MSN
Alta Bates Summit Medical Center
Berkeley, CA
ggale@comcast.net
Susie Garcia
Bilingual Family Services Coordinator
Jacob’s Heart Children’s Cancer Association
Watsonville, CA
susie@jacobsheart.org
Julie Good, MD, DABMA
Clinical Assistant Professor
Pediatric Pain and Symptom Management
Lucile Packard Children’s Hospital
Palo Alto, CA
julieg@stanford.edu
Linda Gorman, RN, MN
Palliative Care Clinical Nurse Specialist
Cedars-Sinai Medical Center
Los Angeles, CA
Linda.Gorman@cshs.org
Sally Green
Executive Director
Jacob’s Heart Children’s Cancer Association
Santa Cruz, CA
sally@jacobsheart.org
Karen Heinrich
Founder and Executive Director
Moment by Moment Foundation
Alamo, CA
karenhenrich@pacbell.net
Nancy Hinds, RN
Founder
Hinds Hospice
Fresno, CA
www.hindshospice.org
Debra Houston, MFT
Family Services Director
Jacob’s Heart Children’s Cancer Association
Watsonville, CA
debra@jacobsheart.org
Kendra Howell
Director
Children’s Miracle Network
Salinas, CA
khowell@svmh.com
Bella Hughes, RN, MS
Executive Director
Visiting Nurses Association of Santa Cruz County
Santa Cruz, CA
hughesb@sutterhealth.org
Kathleen Ingman, Ph.D.
Clinical Director, Behavioral Sciences
HOPE Program, Children’s Hospital Los Angeles
Los Angeles, CA
kingman@chla.usc.edu
Nancy Iverson, MD
Physician
Comfort for Kids
niverson7@earthlink.net
Elizabeth Jenkins, RN
VITAS Hospice
Irvine, CA
elizabeth.jenkins@vitas.com
Donna Jones, ED
CEO
American Red Cross, Santa Cruz County Chapter
Santa Cruz, CA
djones@scredcross.org
Michael Joseph, MD
Asst. Prof. of Anesthesiology and Pediatrics
Children’s Hospital Los Angeles
Los Angeles, CA
mjoseph@chla.usc.edu
Kathleen Kelly, RN, BSN, OCN
Director
Southern California Cancer Pain Initiative, City of Hope National Medical Center
Duarte, CA
kkelly@coh.org
Julie Kennedy, RN, JD
Director of Nursing
George Mark Children’s House
San Leandro, CA
jkennedy@georgemark.org
Catherine Klatzker, RN, CCRN
Pediatric Intensive Care Unit
Children’s Hospital Los Angeles
Los Angeles, CA
cklatzker@chla.usc.edu
Lynda Knight
lynda_pulpan@comcast.net
Glen Komatsu, MD
Medical Director
Trinity KidsCare Hospice
Torrance, CA
Glen.Komatsu@providence.org
Robin Kramer, RN, MS, PNP
Program Coordinator, Compass Care, Pediatric Palliative Care Program
UCSF Children’s Hospital
San Francisco, CA
robin.kramer@ucsfmedctr.org
Tracy Kruger, RN, MSN, PNP,CPON
Pediatric Hematology/Oncology Case Manager
Kaiser Permanente Los Angeles Medical Center
Los Angeles, CA
Tracy.E.Kruger@kp.org
Diane Kurtz, RN
Director of Pediatric Home Health
Central Coast Visiting Nurses Association
Salinas, CA
dekurtz@ccvna.com
Carrie Langsam, RN, BSN
Ventura County, CA
csam549@sbcglobal.net
The Lee-Ribas Family
casalee-ribas@igc.org
Katie Leyva, RN
Pediatric Oncology Nurse
Children’s Hospital of Orange County
Orange, CA
kleyva@choc.org
Charlene Martin, RN, BSN
Case Manager
Salinas Valley Memorial Hospital
Salinas, CA
831-757-4333, ext. 1439
Elizabeth Martin
Kaiser Oakland Medical Center
Elizabeth.C.Martin@kp.org
Fumiko Mato, MA, CCLS
Child Life Specialist, Hematology/Oncology
Children’s Hospital Oakland
fumikomato@aol.com
Margy Mayfield, RN, BSN
Director of Clinical Services
Coastal Kids Home Care
Salinas, CA
margy@coastalkidshomecare.org
Randi McAllister-Black, Ph.D.
Psychologist and Prof. of Pediatrics Director, Internship Training Program
City of Hope National Medical Center
Duarte, CA
RMcAllister @coh.org
Sharon Mills, FNP
Pathways Kids
Sunnyvale, CA
sharon_kay@sbcglobal.net
Karen Nolan
Hospice of the Valley
San Jose, CA
knolan@hospicevalley.org
Chris O’Connor
Hospice of the Valley
San Jose, CA
chriso@hospicevalley.org
Stephanie O’Mara, RN
Palliative Care Coordinator
Dominican Hospital
Santa Cruz, CA
somara@chw.edu
Scott and Suzanne Peterson - Paige’s Parents
petersons2@sbcglobal.net
Tino Plank
Admissions Director
Heartland Hospice Services
Monterey, CA
tinoplank@yahoo.com
Ann Pomper
Executive Director
Hospice Caring Project
Scotts Valley, CA
apomper@hospicesantacruz.org
Elsa Quezada
Executive Director
Central Coast Center for Independent Living
Salinas, CA
cccil@cccil.org
Lori Rabner, M.S.W.
Social Worker
Jonathan Jaques Children’s Center, Miller Children’s Hospital, Long Beach
Long Beach, CA
lrabner@memorialcare.org
Judi Rasmussen
Director of Perinatal Services
Natividad Medical Center
Salinas, CA
rasmussenj@co.monterey.ca.us
Tina Ratto
tina.ratto@ucsfmedctr.org
Rebecca Rice, MA, CCLS
Child Life Specialist, Hematology/Oncology
Children’s Hospital Oakland
Oakland, CA
rrice@mail.cho.org
Belinda Rosales-Webb
Lucile Packard Children’s Hospital
Palo Alto, CA
belindar@stanford.edu
Danielle Roubinov, BA
Staff Research Associate
Children’s Comfort Care Resource Program, UCLA Pediatric Pain Program
Los Angeles, CA
droubinov@mednet.ucla.edu
Maria Runciman
Director of Clinical Programs
Catholic Charities
Seaside, CA
mrunciman@dioceseofmonterey.org
Carrie Rose, MSW
Social Worker
San Andreas Regional Center
Campbell, CA
sacrose@sarc.org
Bonnie Safine, RN, DNSc
Director of Clinical Services
Hospice of the East Bay
bonnies@hospicecc.org
Lisa Schoyer, MFA
Chief, Family Support
Los Angeles County
Los Angeles, CA
lschoyer@ladhs.org
Sophia Schultz, RN
Nurse Care Coordinator
Partnership for Children
Watsonville, CA
sophia@childrenshospice.org
Sally Sehring, MD
ssehring@peds.ucsf.edu
Sandy Sentivany-Collins
Pediatric Pain Management/Palliative Care
Lucile Packard Children’s Hospital
Palo Alto, CA
ssentivanycollins@lpch.org
Nancy Shanks
namaste_nance@yahoo.com
Joyce Shefren, BSN, CHPN
Case Manager
Pathways Kids
Sunnyvale, CA
jshefren@pathwayshealth.org
Barbara Sourkes, PhD
Pediatric Palliative Director
Lucile Packard Children’s Hospital
Palo Alto, CA
bsourkes@stanford.edu
Shoshana Spielman, RN
Nurse Care Coordinator
Partnership for Children
Watsonville, CA
shoshana@childrenshospice.org
Alessandra Elisabetta Strada, Ph.D.
Psychology Fellow, Palliative Care and Hospice
Stanford University/Palo Alto Veteran Administration
Palo Alto, CA
alessandrastrada@aol.com
Liz Sumner, RN, BSN
Palliative Care Program Coordinator
The Elizabeth Hospice
Escondido, CA
LHSumner@Elizabethhospice.org
Mindy Szelap
mszelap@lpch.org
Janet Thomas, RN, CMCN
Pediatric/PICU Case Manager
Kaiser Permanente Los Angeles Medical Center
Los Angeles, CA
Janet.C.Thomas@kp.org
Sally Thomas
Administrator Manager
Jordan House
Scotts Valley, CA
administrator@jordanhouse.org
Christy Torkildson, MSN, RN, PHN
National Director: Education, Research, Professional Relations
George Mark Children’s House
San Leandro, CA
torkc@sbcglobal.net
Oscar Torres
District Manager
San Andreas Regional Center
Watsonville, CA
saotorres@sarc.org
Pamela Troia
Chapter Leader
Compassionate Friends of Monterey County
Monterey, CA
ptroia@sbcglobal.net
Candace Varner
Clinical Operations Manager
Trinity KidsCare Hospice
Torrance, CA
Candace.Varner@providence.org
Analisa Velasquez, MSW
Social Worker
Lucile Packard Children’s Hospital at Stanford
Palo Alto, CA
avelasquez@lpch.org
Claire Vesely, RN
Admissions Coordinator
George Mark Children’s House
San Leandro, CA
cvesely@georgemark.org
Rose Virani, RNC, MHA, OCN
Senior Research Specialist
City of Hope National Medical Center
Duarte, CA
rvirani@coh.org
Gay Walker, RN
Program Development and Clinical Manager
Trinity KidsCare Hospice
Torrance, CA
Gay.A.Walker@providence.org
Lisa Walker-Visher
Valley Medical Center
San Jose, CA
lisa.walker-visher@hhs.co.santa-clara.ca.us
Joetta Wallace, MSN, RN, FNPC
Palliative Care Program Manager
Miller Children’s Hospital, Long Beach
Long Beach, CA
jdwallace@memorialcare.org
Terri Warren, MSW
Executive Director
TrinityCare Hospice
Torrance, CA
Terri.Warren2@providence.org
Susan Willoughby, RN
Director of Palliative Care
Children’s Hospital Central California
Madera, CA
swilloughby@childrenscentralcal.org
Janet Windt, RN
OB Perinatal
Watsonville Community Hospital
Watsonville, CA
janet_windt@chs.net
Rita Winings
Volunteer Coordinator
Jordan House
Scotts Valley, CA
Sandee Wishon, RN, PNP
Hospice by the Bay
swishon@hospiceofthebay.org
Deborah Wright, RN, PHN
Nurse Case Manager
California Children’s Services
Santa Cruz, CA
deborah.wright@health.co.santa-cruz.ca.us
Paupu Yep
Resource Specialist
San Andreas Regional Center
Salinas, CA
sapaupu@sarc.org
Sarah Zaglifa Carle
sarah.carle@kp.org
Heidi Zeichick
heidiz@hospicecc.org
Jane Zimmerman, MSW
Social Worker
Lucile Packard Children’s Hospital at Stanford
Palo Alto, CA
jzimmerman@lpch.org