When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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Appendix H: Progress in Pediatric Palliative Care in New York State--A Demonstration Project
Appendix H: Progress in Pediatric Palliative Care in New York State--A Demonstration Project
Pages 638-664
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From page 638... ...
. The primary goal of the demonstration program is to promote the implementation and testing of the "PACC model." "PACC," which stands for Program of All-Inclusive Care for Children, is the pediatric palliative care mode!
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From page 639... ...
The demonstration projects may explore a range of public and private options for program financing, but development of Medicaid waiver a~o~olications that will su~o~oort ex1 1 1 1 1 1 1 ~ · ·11 1 1 1 11 ~ 1 panded coverage of services will be attempted by all of the projects. New York state's PACC demonstration project builds on a long-stand~ng and well-regarded program in pediatric palliative care, the Essential Care program (ECP)
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From page 640... ...
Thus, about one of every eight children served by the Essential Care program ultimately experiences long-term remission and cure. While in the program, each patient receives nursing, social work, and child-life services, in addition to support from the primary physician or physician specialist.
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These include the parent organization of the Essential Care program, the Center for Hospice and Palliative Care (CHPC) , as well as the New York State Department of Health (DoH)
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The table includes basic information on events leading to the demonstration project and a detailed list of project activities in year 1 followed by a summary of goals for the second year. TABLE H.2 Chronology of the New York State PACC Demonstration Project Year Event Pre-Demonstration Project Events 198 8 Essential Care program established 1997-1999 PACC model created by CHI Task Force 1998 Essential Care program becomes part of the Center for Hospice and Palliative Care Demonstration Project Events 2000 2001 Demonstration Project Grant application submitted November J anuary J anuary March April March-December Grant activities commence New York State Advisory Committee formed CHI demonstration project conference Listserv established for advisory committee Quality-of-Life measure collaboration initiated Cost assessment designed and conducted
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From page 643... ...
Develop standardized needs assessment for community and family level assessment Develop 1115 Medicaid waiver application Continue development of methods for generalizing the Essential Care program to other areas in the state Continue collaboration on development of QoL measures aThe conference was begun as scheduled on September 11, but rescheduled and held on November 1 because the day's events precluded completion of the conference. PROGRAM COSTS AND MEDICAID WAIVER APPLICATION DEVELOPMENT The development of a federal 1115 Medicaid waiver is one of the expected outcomes of this demonstration project.
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From page 644... ...
The primary goals of the actuarial analyses will be to calculate the cost of care for Medicaid children with life-threatening conditions in the most accurate way possible and to compare the cost of care for Medicaid children in the Essential Care program with the costs of care of a clinically matched group of Medicaid children outside the Essential Care program. In order to achieve these goals, the actuarial organization will obtain Medicaid claims data that will include claims histories for children who died with selected diagnoses.
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Based on this review, as well as a review of evaluation research methods, it was concluded that case studies would be productive both in advancing understanding about communication within the Essential Care program, and in documenting the nature of communication as an outcome of the demonstration project. Two levels of case study have been conducted in the first year, and described in the following: 1.
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From page 646... ...
For example, the following comment could be used to illustrate the importance of homebased care. This comment was made by the mother of a 2-year-old boy who died at home with the support of the Essential Care program.
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From page 647... ...
responses in our country. The New York state demonstration project included provisions for a needs assessment to be conducted in conjunction with the cooperating stakeholder groups: the Essential Care program; the New York State Advisory Committee on Pediatric Palliative Care and its parent organization, The Hospice and Palliative Care Association of New York State; the New York State Department of Health; other experts invited by the advisory committee; and families who are currently caring or have previously cared for a child with a life threatening illness.
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From page 648... ...
the New York State Children's Palliative Care Advisory Group, 2. the professional networks of experts in children's palliative care needs beginning with the advisory group and extending to colleagues throughout the state, and 3.
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From page 649... ...
The complete list of children's needs is presented in Addendum H.2. The brainstorming on family needs produced 63 unique statements from 40 individual experts in pediatric palliative care throughout New York state.
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Meeting the physical comfort needs of children with life-limiting illnesses is widely acknowledged as a primary goal of palliative care. In fact, the definition of the term "palliation" or "palliative care" suggests this set of needs more than any other.
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From page 651... ...
1 . 1- · I`r Items Included In the assessment were those related to access policies t~access to palliative care benefit from the time of diagnosis without a time constraint" and "reduction of barriers imposed by the six-month limit of the hospice benefit")
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From page 652... ...
may also be aclapteci for use in studies clesigneci to estimate the number of chilciren and families, as well as the greatest areas of need, to be inclucleci in expancleci Meclicaici coverage. This could be accomplisheci by creation of a survey that could be conclucteci in local communities or statewide with the support of an organization such as the Hospice and Palliative Care Association of New York State.
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From page 653... ...
In the pediatric area, there are as yet no well-accepted measures of quality of life for children and families in pediatric palliative or hospice care. Measurement of patient and family satisfaction is already standard practice in the Essential Care program; thus, the focus of the research activity has been patient and family qualityof-life.
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654 VDHEN CHILDREN DIE Varni JW, Katz ER, Seid M, Quiggins DJL, Friedman-Bender A (1998)
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From page 655... ...
. Or invasive procec ores Provides experiences to foster growth, clevelopment, self-esteem and inclepenclence · Facilitates clevelopmentally appropriate play and interaction at home and in the acute care setting Physicians Physicians are available for consultation on an outpatient basis and will concluct home visits when necessary inclucling The Essential Care medical director provides consultation services, Attendance at weekly team meetings Program admission consultation Consultation and liaison to chilcl's primary physicians Availability for home visits when necessary
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Home Health Aides Utilized as needed to supplement home care services Volunteers · Utilized to support the family and program staff through a variety of activities including baby-sit siblings, cook and clean for families, run errands, provide transportation for clinic visits or for families to visit the child while he or she is hospitalized Ancillary Services Services include outpatient lab blood work done in the home setting and pharmacy services at home Durable medical equipment and supplies are available as needed Physical therapy, occupational therapy, speech, nutritional counseling are available at home Supplementary Services Day care. Essential Care does not provide day care, however, volunteers do provide families with babysitting and short-term respite at home, and community resources are accessed for longer term arrangements ~ ..
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Reduction of barriers imposed by the six-month limit of the hospice benefit 657 5.00 5.00 4.91 4.91 4.73 4.73 4.73 4.73 1) Access to palliative care benefit from the time of diagnosis without a time constraint (such as the hospice regulation)
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Developmentally appropriate activities and information 25) Understandable information about supportive and palliative and hospice care to reduce anxiety and 4.18 4.18 4.18 4.18 4.09 unknowns 4.09 Pleasant distractions from the situation 4.00 Stimulation (via school activity, play, family activities, etc.)
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Ability for nurse practitioners and doctors to make home .
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From page 660... ...
4.00 Privacy Spirituality in their care Family-focused care To have a say in the treatment plan To address fears with a competent professional Talk about their feelings and fears Understandable information about supportive and palliative and hospice care to reduce anxiety and unknowns 3.89 40) The ability to transition in or out of the hospital as needed 3.89 48)
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From page 661... ...
Help with the visual part of the illness so that the child feels as good as possible about his or her body and appearance 1) Access to palliative care benefit from the time of diagnosis without a time constraint (such as the hospice regulation)
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From page 662... ...
Consistency in professional caregivers throughout the illness, including the end stage 42) More nurses/home health aides who are pediatric trained 74)
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From page 663... ...
PROGRESS IN PEDIATRIC CARE IN NEED YORK STATE 663 ADDENDUM H.4 FIVE-CLUSTER MAP OF CHILDREN'S PALLIATIVE CARE NEEDS (D rot ~ .
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From page 664... ...
664 WHEN CHILDREN DIE ADDENDUM H.5 PATTERN MATCH OF IMPORTANCE AND FEASIBILITY RATINGS OF CHILDREN'S NEEDS 4.55 Phys comfort Service Access Dignity/Respect Psych Support Family Support 4.01 Importance J ~ ~ / r= .35 * 3.94 Dignity/Respect Phys comfort Psych Support Family Support .
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