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Palliative Care in the Medical Home
"We don't have to wait until we are very sick and know this
might be 'it'; we can get support from the day we
learn something could happen." - Mattie Stepanek,
February 2000.
Announcements:
April 29 - May 6: (and November 11-18)
Program in Palliative Care Education and Practice / Boston
Harvard Medical School Center for Palliative Care's continuing education course; The course offers intensive learning experiences for physician and nurse-educators who wish to become expert in the clinical practice and teaching of comprehensive, interdisciplinary palliative care, as well as to gain expertise in leading and managing improvements in palliative care education and practice at their own institutions. There are several pediatric scholarships available.
May 12-15, 2008, Grapevine, TX
Initiative for Pediatric Palliative Care Regional Retreat
Sponsored by Cook Childrens Medical Center
We invite interdisciplinary
teams of healthcare providers and family members from all care
settings to join us in this interactive educational retreat.
For more information, contact:
Todd Pearson MD
Medical Director, Pediatric Palliative Care
Cook Children's Medical Center
E-mail: t-pearson@cookchildrens.org
Children's Hospice and Palliative Care Coalition
The Coalition has announced the California counties participating in the new pediatric palliative care waiver and the phase-in schedule for the first three years. The Coalition has been working to collaborate in the realization of a comprehensive pediatric palliative care benefit that truly addresses the needs of children with life-threatening condiations and their families.
In preparation for the waiver, Children's Hospice and Palliative Care Coalition will be launching Benefit Education Strategic Training BEST in Pediatrics. This pediatric palliative care benefit preparation project will be announced at the upcoming Initiative for Pediatric Palliative Care training February 27-29, 2008 at the UCLA Lake Arrowhead Conference Center.
"Cameron's Arc: Creating A Full Life" DVD and Teaching Guide
Available Now!
This new DVD and Teaching Guide on Palliative Care debuted at the Future of Pediatrics Conference in June 2007. More than 30 attendees participated and joined discussion with Dr. Rick Goldstein of Boston and Blyth Lord of the Lord Foundation (stars of the documentary film). To purchase this DVD/Teaching Guide, click on: http://www.aap.org/bst/showdetl.cfm?&DID=15&Product_ID=4340
What is Palliative Care?
Palliative Care is comprehensive, specialized
care provided by an interdisciplinary team to patients and
families living with
a life-threatening or severe advanced
illness expected to progress toward dying and where care
is particularly focused on alleviating suffering and promoting
quality of life. Major concerns are pain and symptom
management, information sharing and advance care planning,
psychosocial and spiritual support, and coordination of
care. The
American Academy of Hospice and Palliative Medicine
"The AAP supports an integrated model of palliative
care "in which the components of palliative care are
offered at diagnosis and continued throughout the course
of illness, whether the outcome ends in cure or death."
It is difficult to determine which children may benefit
from palliative care. If palliative care is reserved for
children who are dying or have a terminal condition, other
patients who may benefit from these services may not receive
them. Time of death is often difficult to predict. If the
nearness of death is used to determine if children receive
palliative care, some children may die without the benefits
of individualized family-centered palliative care. With
a broader definition that includes children living with
a life-threatening condition, all children who need palliative
care may benefit. In addition, aspects of an integrated
palliative care approach, including symptom management and
counseling, may prove beneficial when provided early in
the course of a child's illness."
-Committee on Bioethics and Committee on Hospital Care.
Palliative
Care for Children. Pediatrics Volume 106, Number 02
August 2000, pp 351-357
In a medical home, the care you receive
combines palliative care and life prolonging care for children
and youth living with life-threatening or terminal conditions
and their families.
In a medical home, palliative care is part of the
general philosophy of care and not a separate part or place
for care.
In a medical home, the concern for the well-being
of the child/youth with special needs and their family is
expressed and demonstrated in verbal and nonverbal interactions.
In a medical home, efforts are made
to understand and empathize with the feelings and
perspectives of the family as well as the child or youth.
News
Independent Television Service Community Campaigns (ITVS)
is pleased to announce the launch of the Community Engagement
Campaign and NEW Web site for A LION IN THE HOUSE. www.itvs.org/outreach/lioninthehouse
A LION IN THE HOUSE is a landmark documentary
mini-series coming to Independent Lens in June 2006 that
spans six years in the lives of five remarkable families
fighting childhood cancer. Viewers will experience the uncertainty
of the entire cancer journey and its rippling effects on
family, community, and professional caregivers.
The LION IN THE HOUSE Community Engagement Campaign
seeks to galvanize public attention around Childhood Cancer
Survivorship, Cancer Health Disparities and Pediatric End
of Life and Bereavement Care. The campaign will support
local collaborations to improve care and strengthen support
systems for families facing childhood cancer. Spearheaded
by ITVS, the campaign encourages local organizations and
public television stations to work in partnership to develop
activities that support goals in key areas, including: organizing
and building strategic partnerships to promote widespread
awareness about cancer health disparities training and professional
development opportunities for individuals working in healthcare,
social services and education connecting patients and families
to culturally competent support helping to sensitize caregivers
and policymakers to the special needs of underserved populations.
STATION OUTREACH GRANTS
Community Engagement Grants (of up to $10,000) are available
through ITVS with support from the Lance Armstrong Foundation.
The grants will be offered to public television stations
- working in collaboration with community partners - to
develop activities related to any one (or more) of the three
campaign focus areas. The Request for Proposals provides
excellent guidance about possible campaign strategies and
activities that can be planned in conjunction with public
television stations and other media. More information about
the grant opportunity is available at the Web site above.
The National Center of Medical Home
Initiatives for CSHCN is a National Outreach Partner along
with: The American Cancer Society, Children's Cause
for Cancer Advocacy, CureSearch, Health Ministries Association,
Hope Street Kids, The Intercultural Cancer Council, The
Lance Armstrong Foundation, The Leukemia & Lymphoma
Society, National Black Nurses Association, Inc., The National
Cancer Institute, National Hospice and Palliative Care Organization,
Oncology Nursing Society Association of Pediatric Oncology
Nurses, Padres Contra El Cáncer
Advisors: Centers for Disease Control and
Prevention Cancer Prevention and Control
For more information on the National Partners and the campaign,
please go to: www.itvs.org/outreach/lioninthehouse/campaign.html
Palliative Care
Programs
California
The Children's Program at San Diego Hospice
The Children's Program at San Diego Hospice, a
collaborative effort of Children's Hospital and Health Center
in San Diego and San Diego Hospice, provides compassionate
care to infants, children and adolescents with life-threatening
illnesses who wish to be cared for at home.
The hospice team provides specialized services that include
focus on pain relief, symptom management and comfort care
for infants, children and adolescents. Services also include
emotional and spiritual support for patients in the Children's
Program, immediate family members and others who are meaningful
in the child's life. The Children's Program also offers
a specialized Early Intervention Program, designed for families
with unborn infants who are expected to have a life-threatening
or life-limiting condition or illness after birth.
Contact:
Children's Program at San Diego Hospice
4311 Third Avenue
San Diego, CA 92103
Phone: (619) 688-1600 | Toll Free: (866) 688-1600
Email:www.sdhospice.org
The Children's Comfort Care Resource Program (Los Angeles, CA)
The UCLA Children’s Comfort Care Resource Program, an educational and resource program in pediatric palliative care based in the Pediatric Pain Program, is partnering with the Medical Home for Children with Special Health Care Needs at UCLA with the goal of developing pediatric palliative care initiatives based on a Medical Home model of care coordination. Medical Home principles for providing care that is compassionate, comprehensive, family-centered, continuous, and culturally effective are incorporated into resources and educational opportunities for pediatric hospital staff, residents, fellows, and faculty in the area of palliative care.
We are developing a pediatric residency educational curriculum in pediatric palliative care. In addition, we regularly convene a multidisciplinary comfort care panel for clinical case review and devise palliative care treatments plans for inpatients and outpatients with complex critical illnesses. We intend to provide educational programs, both at UCLA and in the community, related to the assessment of and intervention for children with complex medical and psychosocial needs related to their illnesses. The Children’s Comfort Care Resource Program and the Medical Home for Children with Special Health Care Needs at UCLA continually collaborate on program development and research projects that promote the goals for palliative care and the Medical Home.
Contact:
Elana Evan, Ph.D.
Clinical Psychologist
Children's Comfort Care Resource Program, Coordinator
Pediatric Pain Program
David Geffen School of Medicine at UCLA
22-464 MDCC
10833 LeConte Avenue
LA, CA 90095-1752
Phone: 310-206-1771 | Email: eevan@mednet.ucla.edu
Jacob's Heart Children's Cancer Association (Freedom, CA)
Jacob's Heart is an organization dedicated to improving
the quality of life of children with cancer and to ease
the burdens faced by their families. Services include free
individual and group counseling for bereaved families, children
with cancer, their parents, grandparents, and siblings;
and emergency rides from home to the hospital for children
undergoing intensive cancer treatment at hospitals far from
home.
Contact:
Jacob's Heart Children's Cancer Association
2007 Freedom Blvd.
Freedom, CA 95019
Tel: 831.724.9100
www.jacobsheart.org
Pediatric Palliative Care Program at Lucile Packard
Children's Hospital at Stanford
The Pediatric Palliative Care Program uses an interdisciplinary
and comprehensive approach to caring for children living
with life-threatening or terminal conditions. The program
includes physical, psychological, social, spiritual and
respite care, as well as care for the bereaved family after
the patient's death.
Packard Children's Hospital Pediatric Palliative Care Program
includes a research component to document the effect palliative
care has on patients, families and staff. The program also
educates physicians and staff to handle palliative care
issues. This education component includes a six-week course
for incoming residents to help prepare them to handle their
patients' deaths more effectively and compassionately.
Contact:
Barbara Sourkes, PhD
Director
Matt Lash (Communications Department)
Pediatric Palliative Care Program
Lucile Packard Children's Hospital at Stanford
725 Welch Road,
Palo Alto, CA 94304
Phone: (650) 497-8364 | Email: matt.lash@medcenter.stanford.edu
Florida
Children's Hospice - The Hospice of the Florida
Suncoast
Tailored to terminally ill children and their families,
Children's Hospice offers a panorama of services: counseling,
medical expertise, respite care, home health care, and sibling
support. Through the Hospice Child and Family Support program,
hospice children's counselors provide individual and family
counseling and bereavement services designed for children
and teenagers who have a seriously ill family member or
have experienced the death of a loved one.
Contact:
Kathy Brandt
The Hospice of the Florida Suncoast
300 East Bay Drive
Largo, Florida 33770
Phone: (866) 523-2413 | Email: kathybrandt@thehospice.org
| www.thehospice.org
Missouri
PATHS (Pediatric Approach to Hospice Support)
- SSM Cardinal Glennon Children's Hospital (St. Louis)
Cardinal Glennon's program builds and maintains
a network of providers who give dying children and their
families the care they need, including physical, emotional
and spiritual support, without requiring them to leave the
familiarity of home.
In collaboration with the Saint Louis University School
of Medicine, the hospital has created a palliative care
team to educate pediatricians, the staffs of community hospitals,
and area hospices. The curriculum encompasses the principles
of pediatric pain control and other palliative services.
The project team coordinates care for families at this most
critical time in their lives, provides pastoral care, as
well as grief support and counseling.
Contact:
Suzanne S. Toce, MD
Professor of Pediatrics
SSM Cardinal Glennon Children's Hospital
1465 S. Grand Blvd.
St. Louis, MO 63104
Phone: (314) 577-5642 | Email: tocess@slu.edu
| www.footprintsatglennon.org
New York
Essential Care Program - A Pediatric Program of
Home Care Buffalo and the Center for Hospice and Palliative
Care
The Essential Care Program provides medical and non-medical
supportive services vital to the coping and adjustment of
children and families who are facing life-threatening illnesses.
Holistic medical and non-medical services are provided in
the home by an interdisciplinary team consisting of registered
nurses, medical social workers, and adolescent and child
life specialists.
Contact:
Sue Huff, RN, BSN
Director
Essential Care Program
225 Como Park Boulevard
Cheektowaga, NY 14227-1480
Phone: (716) 686-8173 | Email: shuff@palliativecare.org
Ohio
A Palette of Care - Akron Children's Hospital
The Haslinger Family Pediatric Palliative Care
Center at Akron Children's Hospital is a full-service, transdisciplinary
program for patients of all ages with any life-threatening
childhood diagnosis. Known as "A Palette of Care,"
the team provides pain and symptom management, seamless
care coordination and case management, and psychological,
spiritual and emotional support. Care is provided wherever
the child is most comfortable
(home, hospital, in-patient hospice, long term care facility)
by physicians, advance practice nurses, case manager, bereavement
coordinator, social worker, chaplains, child life specialist,
expressive therapists, psychologist, pharmacist, dietitian,
physical therapist and trained volunteers. The program works
with the child's primary care teams as well as community
agencies involved in the child's care (including hospice).
The program includes an academic pediatric palliative care
fellowship, bereavement and support groups, financial assistance
for families through the Andre Sobel River of Life Foundation
and other family grants, and educational initiatives for
hospital and community providers. We are based at Akron
Children's, one of the largest freestanding pediatric hospitals
in the country, and provide service, including home visits,
to a large
geographic area in northeast Ohio.
Contact information:
Sarah Friebert, MD
Director, A Palette of Care Program
Haslinger Division of Pediatric Palliative Care
Akron Children's Hospital
One Perkins Square
Akron, Ohio 44308
Phone: (330) 543-3343 |Voicemail: (330) 543-3855 |Fax: (330)
543-3539
Email: sfriebert@chmca.org
Texas
The Butterfly Program - Houston Hospice
The Butterfly Program is a plan of care for children
with life-limiting illnesses. The program has three components:
pediatric support services, pediatric hospice services,
and pediatric bereavement care. The Butterfly Program offers
the services of a pediatric palliative care specialist,
nurses, social workers, chaplains, volunteers and home health
aides to home-based outpatients as well as 24-hour coverage
by pediatric nurses, child life therapists and physicians
as supportive care to inpatients.
A component of the Butterfly Program is the Butterfly Room.
It is a home-like room in an Intensive Care Unit for dying
children who cannot be transferred to a home hospice. The
Butterfly Room, decorated with butterfly wallpaper and carpeting,
is designed to accommodate an entire family with a kitchenette,
pullout sofa, and games and toys for children of all ages.
Contact:
Marcia Levetown, MD
Medical Director
The Butterfly Program - Houston Hospice
8811 Gaylord, Suite 100
Houston, Texas 77024-2923
Phone: (713) 468-2441 | Toll Free: (800) 824-2911
Email: info@houstonhospice.org
| www.houstonhospice.org/services.htm
Washington
Supporting Children at the End of Life: Improving Access
and Quality of Care - Children's Hospital and Regional Medical
Center (Seattle)
This statewide represents a unique collaboration
among Children's Hospital, local and state hospice organizations,
the Washington Department of Health and the area's two largest
insurers, Regence Blue Shield and Premera. The program aims
to optimize comfort and quality of life when a child has
a progressive life-limiting illness.
The joint project develops procedures for flexible insurance
benefits, ensuring that reimbursement is obtained for services
that best meet the needs of the child and family. The program
also utilizes a decision-making tool that involves patients
and families in care planning for progressive, potentially
terminal illnesses among children. Planning for the child's
care incorporates pediatric pain and symptom management
protocols. In addition, program researchers evaluate both
clinical and financial outcomes of the project.
Contact:
Russ Geyer, MD, and Ross Hays, MD
Children's Hospital and Regional Medical Center
4800 Sand Point Way, NE
Seattle, WA 98105
Phone: (206) 526-2107 | Email: rgeyer@chmc.org
Email: rhays@chmc.org |
www.seattlechildrens.org
Web sites/Organizations
American Academy of Pediatrics Palliative Care Information:
www.aap.org/healthtopics/palliativecare.cfm
Association for Children with Life-Threatening
or Terminal Conditions and Their Families (ACT):
www.act.org.uk
The ACT Charter is intended to raise awareness and understanding
among all those who come into contact with children with
life-threatening conditions and their families. The Charter
is housed in the UK.
Canadian Network of Palliative Care for Children:
www.CNPCC.ca
This website, funded by the Texas Cancer Council, was developed
to bridge the gap that exists during the transition from
aggressive treatment to quality palliative care at the end
of life. Developmental considerations are presented to provide
a conceptual background for learning how to work with a
child who is dying. Understanding the child's perception
of death will assist the health care provider in supporting
the family as well as the child when end-of-life care must
be discussed.
CarePoints: www.carepoints.org
The CarePoints Web site is a Pediatric Palliative Care Resource
Site with a focus on children with life limiting illnesses
and complex medical needs.
Children's Hospice International (CHI )
chionline.org/
CHI provides education, training and technical assistance
to those who care for children with life-threatening conditions
and their families. CHI, a non-profit organization was founded
in 1983 to:
- Promote hospice support through pediatric care facilities
- Encourage the inclusion of children in existing and
developing hospice, palliative, and home care programs
- Include the hospice perspectives in all areas of pediatric
care, education, and the public arena.
CHI has developed a number of publications devoted to home
care, palliative pain and symptom management, the development
of hospice care services and related subjects. The information
provided in these publications are to assist the clinicians,
parents, volunteers, or any other person caring for a child
with a life-threatening condition and their family
This International Resource Directory provides information
for more than 1500 programs around the world that care for
children with life-threatening conditions and their families.
Dyingwell.org
Dr. Ira Byock, long time palliative care physician and advocate
for improved end-of-life care, and a past president of the
American Academy of Hospice and Palliative Medicine, provides
written resources and referrals to organizations, Web sites
and books to empower persons with life threatening illness
and their families to live fully. www.dyingwell.com/
National Alliance for Children With Life Threatening
Conditions (NACWLTC)
NACWLTC is dedicated to improving palliative, end of life
and bereavement services for children with life-threatening
conditions and the loved ones who care for them. They offers
a National Resource Center to help every community in America
access, develop, implement and evaluate services or children
with life-threatening conditions. http://www.nacwltc.org/index.asp
The National Family Caregivers Association (NFCA)
www.thefamilycaregiver.org/about/
This Web site supports, empowers, educates, and speaks up
for the more than 50 million Americans who care for a chronically
ill, aged, or disabled loved one. NFCA reaches across the
boundaries of different diagnoses, different relationships
and different life stages to address the common needs and
concerns of all family caregivers.
National Hospice and Palliative Care Organization
www.nhpco.org/templates/1/homepage.cfm
This Web site provides links to better your understanding
about hospice and palliative care. Considered to be the
model for quality, compassionate care at the end-of-life,
hospice care involves a team-oriented approach to expert
medical care, pain management, and emotional and spiritual
support expressly tailored to the patient's needs and wishes.
Partnership For Parents
http://www.partnershipforparents.org/
The National Hospice & Palliative Care has announced its new online support for parents of seriously ill children in both English and Spanish. This site is easily navigated and covers a spectrum of issues from parents facing a new diagnosis through those coping with bereavement.
Robert Wood Johnson Foundation (RWJF)
For the past decade RWJF has worked to bring attention to
the need for improvements in end-of-life care and lay the
groundwork for their implementation. The Foundation currently
is focused on preserving the gains made by its past projects
and programs. There Web site has many resources on this
topic including: National Programs, Funding Opportunities,
Active Grants, Grant Results Report, Research, Publications,
News Releases and features. Click
here to access their Web site.
Last Updated
August 18, 2008
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