Pittsburgh Pediatric Palliative Care Coalition

Purpose of PPPCC

The goal of the Pittsburgh Pediatric Palliative Care Coalition is to develop in Western Pennsylvania a combination of active and compassionate therapies – providing pain and symptom management of terminally ill children.  And through support services that assist our children and families to fulfill their physical, psychological, social and spiritual goals. Our goal is to develop services that are sensitive to the personal, cultural and religious values of our children and families. 

The Western Pennsylvania School for Blind Children has agreed to serve as the fiscal sponsor on behalf of the Coalition, of which it is a member, due to their experiences serving this population’s educational, respite and end of life needs over the years. The School will provide a financial report to the Funding organization mid-stream in December of 2004 and again following the completion of the project in April 2005. This coalition has been newly formed solely to examine the needs and feasibility of pediatric hospice service delivery options for children with life-limiting illnesses in Western Pennsylvania. 

Problem To Be Addressed

In 2003, the Western Pennsylvania School for Blind Children experienced the deaths of 12 students. This traumatic experience compelled the staff to seek out training and resources that would increase their knowledge and skills about the end of life issues that many families attending the school face. Unfortunately, The School discovered that there were no community service providers for end of life care for children. This was surprising given the following statistics.

According to the Pennsylvania Department of Health Statistics, 2,535 children ages 0-18, died in the State of Pennsylvania in 2002. Perinatal conditions, congenital malformations, malignant neoplasms and diseases of the heart were reported to be among the top 5 causes of death. Statistics provided by the Western Pennsylvania Make a Wish Foundation stated that over 700 children are newly diagnosed with a life threatening illness each year. These conditions and diseases devastate families and immerse them in a world full of medical professionals, frequent and lengthy hospitalizations, a multitude of tests, therapies and medicines. Families must learn to navigate this new world while wondering if their child will survive and children grow up quickly amidst their pain, fear and isolation. Without help, families can and do fall apart. Numerous studies cite a divorce rate of 75% in families where a child has died.

The good news is that there is a movement across the globe to help families alleviate their physical, emotional and spiritual suffering. That movement is called Pediatric Palliative Care. Pediatric palliative care refers to caring for or comforting children with progressive life-limiting illnesses using a system of comprehensive, interdisciplinary services. The focus of care is to enhance the quality of life for children and families. This is achieved through a combination of active and compassionate therapies, pain management, and supportive services that help children and families meet their unique physical, psychological, social and spiritual goals. This movement began in the United States in 1978, when Edmarc, the first in-home hospice program in the nation designed specifically for children, was established in Suffolk Virginia. The mission of this program was and is to ease the trauma of a child’s illness or death and to reduce the disabling effects of pediatric illness, loss and bereavement on families. Today there are approximately 250 in-home or hospital based, hospice programs specifically for children across the United States.

In 1982, another avenue for providing pediatric hospice care was established. Helen House, a free-standing facility for pediatric palliative care, was built in Oxford, England. This facility was created to meet the tremendous need for respite care as well as pain management and end of life care when hospital or home care could no longer meet the needs of families. Since 1982, there have been approximately 27 free standing pediatric hospices established in the UK. In 1995, Canuck Place in Vancouver, Canada became the first pediatric hospice in North America and in April of 2004, GeorgeMark in San Francisco California became the first to open it’s doors in the United States.

Currently, the United States Federal Government has begun to engage in the pediatric hospice movement as well. The two major public policy changes that are being examined at the Federal level are:

1. Development of policy that enables a child to become eligible for hospice care when he or she is diagnosed with a life-limiting illness. A life limiting illness is defined as an illness in which the child is not expected to live past the age of 18. This is a monumental change from the current adult criteria, which requires a physician’s prognosis of 6 months or less live.
2. Development of policy that allows children to continue with curative treatments and still be eligible to receive hospice services, which includes much needed respite care services.

These changes will result in the opportunity for families to continue with hope and curative treatments while also talking about, preparing for and receiving support for the possibility of death.

Despite all of this growth and change across the United States, Pennsylvania remains a state in which there are no hospice programs that are specifically designed for children. More specifically, in Allegheny County, if and when hospice services are available to children and families, it is through one of three adult hospice programs. These programs are willing to accept the challenge of learning how to serve these families, however the specific expertise, skills and services involved in the care of pediatric patients are not inherent in hospices who care for a predominantly elderly population. Knowledge of pediatric specific diagnoses, child development stages, pediatric psychosocial and spiritual issues, pediatric community services, pediatric medication dosing and prescribing and differences around insurance coverage, are some examples of the specific expertise that is needed to serve this population. Reimbursement for pediatric services is also an issue. The medications needed for pain and symptom management of pediatric patients can cost up to $1,000 a day. These costs are not reimbursed by insurance companies because they use Medicare standards for hospice medications, which do not include pediatric medications. This along with the extra time needed to care not only for the child who is ill but also parents and siblings, drive up costs and create challenging financial situations for adult hospices. It is important to note, however, that there are a number of in-home pediatric hospice programs throughout the United States that have begun as part of an adult hospice. This may be the most optimal way to begin a successful program, but more data is needed to assess this option for the Pittsburgh area. Because of all of these factors, it is crucial to assess current service delivery to this population and examine the viability of a various pediatric hospice program options in Allegheny County.

Project Goals and Objectives

There are several key issues that need to be examined in determining the needs for and feasibility of a pediatric hospice in the Pittsburgh region. It is important to establish a Coalition of pediatric service providers to conduct a resource mapping and needs assessment study that examines the existing services and any continuing needs for pediatric palliative care services. This Coalition is currently being organized and has scheduled the first meeting for mid September. The service providers that make up the Coalition for Pediatric Palliative Care are:

The Western Pennsylvania School for Blind Children – Dr. Janet Simon, Executive Director
The Children’s Home – Pam Schanwald, Executive Director
The Children’s Institute – David Miles, Executive Director
Children’s Hospital of Pittsburgh – Carol May, Supportive Care Manager, RN, Timothy Murphy, MD, Pediatric Pulmonologist
          and Regina Jackaki MD Hematology/Oncology
Highmark Caring Place – Andrea Lurier, Child Grief Specialist
Highmark Caring Program for Children with Special Needs – Amy Shannon, LSW, MSW
Forbes Hospice – MaryAnne Fello, Director. Dan Leger, Pediatric RN
Three Rivers Hospice – Paula Minnicks, Director of Hospice Services
Family Hospice – Virginia Valentine, RN, Pediatric Palliative Care Coordinator
Family House – Cindy Roth, Director
A Child’s Way – Carolyn Brickley, Clinical Director
Ronald Mc Donald House – Bill Grattan, Executive Director
Make a Wish Foundation – Ann Fisher, Director of Communications
Fox Chapel Presbyterian Church – Helping Hands Healing Hearts Program, Joan Hoag,
Founder of Edmarc, Dorothy Hill, Chairperson and Pris Ebert, Chairperson
West Penn Hospital – Alan Lancy M.D. Neonatal Division
Allegheny General Hospital – Michelle Pryor, RN Pediatrics
Allegheny County Respite Care Coalition – Donna Salovay Esq. Board Member
Children’s Home Ventilator Program – Debbie Hieneki MSN, RN, Nurse Coordinator
Five families chosen from these programs

Addendum IV of this application gives a brief synopsis of the services each organization currently provides.

This coalition will work together to achieve the following goals:

1. Create a resource map of the services currently available to children with life limiting illnesses in Allegheny County and examine any future plans for expansion of these services. This will illuminate any gaps in services and will help to determine how pediatric hospice can best be implemented in the Pittsburgh region without any duplication of services.
2. Create and conduct a needs assessment survey for families and providers in Allegheny County to complete in order to quantify the needs of these families and assist in creating options for service delivery.
3. Identify the barriers to providing hospice and palliative care to children in Allegheny County
4. Conduct further site visits to an in-home pediatric hospice, and a hospital based program to compliment the visits already conducted to Canuck Place and George Mark Children’s Home. These visits will examine service delivery options, funding and reimbursement issues and the differences, if any, in the population served by these programs.
5. This coalition will also conduct a feasibility study that will examine the viability of the various options of service delivery for pediatric hospice in the Pittsburgh region.
    

Implementation

The implementation of this project will begin with the first scheduled meeting of the coalition in mid September. This meeting will enable the introduction of the various service providers to each other and result in a grid that reflects the current programs and the future outlook for service delivery to children with life limiting illnesses and their families. Subcommittees will also be created, if needed, to assist with the various steps of the study.  In October the Coalition will meet and create a needs assessment survey for families and community organizations to complete to assist in quantifying the needs of this population. The survey will be carried out in the months of November, December and January and the Coalition will meet again in January for the report of the results and creation of the feasibility study. Meetings will be held by the Coalition during these months as needed. The feasibility study will be conducted in February and March with Coalition meetings as needed and the final report from the needs assessment and feasibility study will be compiled and presented in April of 2005.

This study will be conducted by one of three consultation firms that were personally interviewed, demonstrated interest and presented proposals. These proposals are attached in addendums I, II and III of this application. After conducting interviews with each of the consultants and reviewing the proposals we feel that the Bayer Center for Nonprofit Management is the best fit in both their understanding and cost assessment for this project. The cost of this study will be dependent on the consultation firm chosen by the Forbes Fund and is reflected in the respective proposals. For the purposes of this application we are asking the Forbes Fund for $15,000 – $20,000 to cover the costs of the study based on the consultant chosen.

The end-product of this project will be two fold. First, a report will be generated, based on the data collected, that will quantify and describe the needs of children with life-limiting illnesses and their families in Allegheny County. This report will also describe the various options for pediatric hospice service delivery and the feasibility of these options in Allegheny County. A model for service delivery, based on the study and the consensus of the Coalition, will also be presented in the report. Second, the Coalition for Pediatric Palliative Care will be established and continue to work towards the next steps for hospice and palliative care for children with life limiting illnesses and their families.

Long term funding

Long term funding for this study will not be needed, as it is time limited to approximately eight months. Coalition membership is on a volunteer basis and will continue after the study. Any funding that will be needed to proceed with the next steps in developing a pediatric hospice will be pursued as the Coalition deems necessary after the study is completed.

Evaluation

This project will continually be evaluated based on the following questions:

1.      Is there ongoing participation from at least 70% of the Coalition members?

2.      Is there consensus among the Coalition members regarding the creation and implementation of the needs assessment and feasibility study?

3.      Is there consensus among the Coalition members regarding the options for service delivery model in Allegheny County?

4.      Is there a consensus among the Coalition members regarding the next steps needed for comprehensive pediatric palliative care services?

Addendum IV

Allegheny County Respite Care Coalition – A non-profit organization that is dedicated to helping families find quality respite care.

Children’s Home – An independent, nonprofit licensed organization that offers an adoption program serving infants birth parents and persons seeking to adopt as well as a Transitional Infant Care Hospital serving premature and high-risk infants and their families.

Child’s Way – Another Children’s Home program that offers a pediatric extended day care center serving medically fragile infants and children.

Children’s Institute – A pediatric rehabilitation facility offering inpatient and outpatient programs as well as special education, and a Prader-Willi Syndrome behavior program.

Children’s Hospital of Pittsburgh – An acute care hospital solely devoted to the care of infants, children and young adults.

Family Hospice and Palliative Care – An adult hospice providing comprehensive care to those suffering with a life limiting diagnosis at-home. They have begun to care for pediatric patients within the last year.

Family House – A home away from home for adults that must travel to Pittsburgh for much needed medical care.

Forbes Hospice – An adult hospice providing comprehensive care to those suffering with a life-limiting illness either at-home or in a hospice facility. They have begun taking pediatric patients within the past year.

Fox Chapel Presbyterian Church Helping Hands Healing Hearts Program – A program that will serve as an information and referral center for families of children with life limiting illnesses and as an education and training resource for the professionals who serve those children.

Highmark Caring Place – An organization that provides peer support to children, adolescents and families grieving the death of a parent, primary caregiver or a sibling. 

Make a Wish of Western PA – An organization dedicated to granting the wishes of children with life threatening medical conditions.

Ronald McDonald House – Provides a home away from home for families of children who must travel over 40 miles to Pittsburgh for much needed medical care. 

Three Rivers Hospice – An adult hospice providing comprehensive care to those suffering with a life limiting illness at-home. They have begun to care for pediatric patients within the last year.

Ventilator Assisted Children’s Home Program – A non-profit organization dedicated to promoting high quality cost effective care of the ventilator assisted child at home and supporting families in this endeavor.

West Penn Hospital – A 524-bed tertiary care medical center serving people in Pittsburgh and the tri-state area. They provide neonatal, pediatric and adolescent  care as well.

Western Pennsylvania School for Blind Children – A private school dedicated to the education of blind and severely disabled children by integrating education with other therapies resulting in unique opportunities for children to grow and develop.