Slide 1 - Childrens Hospice International by lonyoo


									MASSACHUSETTS Department of Public Health

The Hospice of the North Shore Danvers, Massachusetts PRESENT
The Tea Party and Pediatric Palliative Care: A BOSTON REVOLUTION!

Dream to Reality
The Pediatric Palliative Care Network

• Advocacy group formed in 2003 • Presented to Legislature in 2004, 2005, and 2006 • Health Care Reform Act, bill signed in 2006 • Funded FY 2007 @ $ 800,000 • 10 Hospices awarded contracts for 5 years • First family admitted in February 2007

Commonwealth of Massachusetts Executive Office of Health & Human Services

Department of Public Health Bureau of Family Health & Nutrition

Division for Perinatal, Early Childhood & Special Health Needs Pediatric Palliative Care Network

Geography Lesson
Massachusetts 13th State in Population 44th State in Land Mass

The Commonwealth of Massachusetts


Population: 6,437,655

The Commonwealth of Massachusetts 11 Hospice Providers

The Commonwealth of Massachusetts 130 Children on Service -- 11.1.08
9 4 13 19
22 13 17 22




Pediatric Palliative Care Network Admission Criteria
• Life Limiting Diagnosis: include but are not limited to:
– Conditions for which curative treatment is possible but may fail – Conditions requiring intensive long-term treatment aimed at maintaining quality of life – Progressive conditions in which treatment is exclusively palliative after diagnosis – Conditions involving severe, nonprogressive disability, causing extreme vulnerability to health complications

• Prenatal to 19 yrs. of age • Resident of Massachusetts • Physician confirmation of diagnosis

Pediatric Palliative Care Network Admitting DXs FY 2008

30% 38%

Cancer Chromosomal Abnormalities Neurodegenerative Disease Other
17% 15%

FY 2008 July 1, 2007 – June 30, 2008 197 Children and Families Served


Pediatric Palliative Care Network Average Length of Stay (ALOS) by Provider FY 2008


Number of Days





142 122


“Navigating the Maze” Integrating Services for Families
• Understanding the programs and services of the Department of Public Health
– – – – – Early Intervention WIC Family TIES Care Coordination Catastrophic Illness in Children Relief Fund

• Department of Mental Retardation • Commission for the Blind

“Navigating the Maze” Integrating Services for Families
• • • • MassHealth (Medicaid) Community Case Management Department of Children and Families SSI

How the contract works:
• Each hospice given a contract amount • Develops their own budget based on projected expenses • Cost reimbursement contract • Flexibility to adjust to actual expense

The contracted hospice agrees to:
• Market the services of the PPCN • Maintain accurate client records • Provide data as requested by DPH within HIPAA guidelines • Invoice monthly for services

A Closer Look At PPCN:
Hospice of the North Shore

We Hit the Ground Running: Our First Family • Family with mom 30 weeks pregnant • Unborn baby has Trisomy 18 • Mom and Dad have previously experienced fetal demise • 3 year-old sibling

Services We Provided to the Family
• Anticipatory grief support • RN support • Supported family in detailing plan for all possible outcomes • Worked with facilities and physicians to help coordinate family’s goals • Sibling support • Bereavement support

Pediatric Palliative Care Network Program Services
Children & Families CONSULTATION for:
• Assessment and case management • Patient or sibling support • Spiritual care • Social services • Volunteer support • Identifying community resources available to families • Advocacy for families with providers • Pain and symptom management • Perinatal counseling and support • Respite care • On-Call • Bereavement care • Medical information gathering/teaching

What’s Not Included:
• Medications • Durable Medical Equipment • Home Health Aide Services • Personal Care Attendant Services • Financial Assistance

PPCN Diagnoses Hospice of the North Shore

Cardiac, 4.55% Cancer, 18%

Neurological Disorders, 22.73%

Genetic & Metabolic Disorders, 55%

Then and Now
Assumptions Realities

• Pain and symptom management will be primary PPCN service • Program will be a medical model

• Greater need for psychosocial support services • Social services primary request

One Family’s Story
• Family with baby diagnosed at birth with Trisomy 13 • Single mom unable to work • Two siblings – ages 14 and 11 • Family uprooted from another state due to domestic issues • Little support set in place as family arrived in MA

A Care Plan to Address Basic Needs
• Social services to help with needs for housing, financial resources, clothing, food, transportation, non-medical equipment… • Help with enrolling siblings into school • Volunteer support • Child care for parent to work/meet needs of other children

A Care Plan to Address Basic Needs (cont.)
• • • • • Child life support for siblings Chaplain services Connection to medical support Private duty nursing through MassHealth Early Intervention Services

Then and Now
• Census will be largely made up of children who need intensive medical care through PPCN
• Respite and on-call services will be well utilized

• Many of our children have conditions involving severe, non-progressive disabilities
• Few families request these services

PPCN Service Requests: Hospice of the North Shore
60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Vol RN SW Pt./Sib Spiritual MD Respite Supp Care Consult

Lessons Learned
• Educate, educate, educate hospice staff and volunteers • Clearly define and communicate PPCN team’s role
• Language is CRUCIAL

• Offer concrete ways for healthcare professionals to present program to families
• Let referral sources know how the program will benefit families and THEM

• PPCN can serve a vital role in care coordination

Care Coordination
• Family with identical siblings

• Diagnosed with metachromatic leukodystrophy • Living with single mom and sibling • Multiple agencies involved in children’s care
• Financial strains including “pre-planning” funeral costs

Support Services Family Receives
• Private Duty Nursing: 24/7 • Case Manager: Pediatric Nurse Practitioner through insurance company • Social worker and attorney through DCF • Pediatric Palliative Care Team (us) • DCF (open case) w/ court appointed GAL • MD Specialists

Services We Are Currently Providing to Promote Quality of Life
• Coordination of care • RN/MD support

• Volunteer support • Help with day-to-day events/circumstances that arise


Pediatric Palliative Care Network Year #3


Pediatric Palliative Care Network Year #3 GOOD NEWS is…. Referrals to the PPCN increase by 5% each month.

Pediatric Palliative Care Network Year #3 BAD NEWS is…. Referrals to the PPCN increase by 5% each month.

FY 2009 Challenges for the PPCN
• Larger pool of potential families to be served • Quantitative data • Sustainability • Waiting list and its implication for families and community partnerships

Jennifer Kenyon Loff, MEd.
Director, Pediatric Palliative Care Network Department of Public Health 250 Washington Street, 5th Floor Boston, MA 02108 617.624.5519

Maureen Forbes, MS, CCLS Hospice of the North Shore Pediatric Palliative Care Program 75 Sylvan Street, Suite B-102 Danvers, MA 01923 (978)750-9335

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