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Pediatric Palliative Care in Colorado



Presented at the National Academy for State Health Policy's 20th Annual State Health Policy Conference in Denver, Colorado. Author: Brian Greffe, MD

Presented at the National Academy for State Health Policy's 20th Annual State Health Policy Conference in Denver, Colorado. Author: Brian Greffe, MD



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    Pediatric Palliative Care in Colorado Pediatric Palliative Care in Colorado Presentation Transcript

    • Pediatric Palliative Care in Colorado Brian Greffe, MD The Children’s Hospital Denver, CO October 16 , 2007 th
    • Pediatric Palliative Care in Colorado The Butterfly Program: A Partnership Model of Care Pediatric Palliative/Hospice Medicaid Waiver
    • History of The Butterfly Program Identification of a need for outpatient pediatric palliative care/hospice care services Key players brought together in 1998 at time during health care consolidations and mergers – The Children’s Hospital – The Children’s Hospital Home Care – Porter Hospice/Centura Home Care and Hospice (adult focused agency)
    • History of The Butterfly Program Evaluation of data regarding pediatric end of life care – # patient deaths/year/inpatient – # patient deaths/year/outpatient – # expected and unexpected deaths – Review of deaths by diagnosis, age, and demographics – Review of family experiences regarding end of life care for their child
    • History of The Butterfly Program Palliative care program sketched out with 50/50 support from each organization Palliative care clearly a part of each organization’s mission Stakeholders identified that would be responsible for creating infrastructure, investment and support: Home Care, Social Work, Foundation, Family Representative, Hospice, Chaplains, Administration, and Marketing TCH to provide medical/home care expertise and Porter/Centura to provide emotional support (social work, spiritual bereavement) Began accepting patients on an outpatient basis in June 1999
    • PHILOSOPHY OF THE BUTTERFLY PROGRAM Pediatric palliative/hospice care does not have to follow the same guidelines as adult end of life care Parents may have a difficult time stopping treatment modalities at end of life Families may also want to continue supportive measures to assist in quality of life Consistency of caregivers is important Program seeks to work with the existing primary care team
    • CRITERIA FOR ADMISSION Patient has a life expectancy of less than 12 months Continued curative approach to the disease is allowed Supportive care modalities such as blood product transfusion, IVF, TPN are acceptable A DNR may or may not be in place Continued contact with PCP/Primary Care Team
    • Expansion of Butterfly Services Slow accrual first two years – Similarity to CHI PACC model meant changing a philosophy with respect to caring for patients with life limiting illnesses – “Turf issues” – Promote an understanding that primary care providers would not be replaced but be offered additional support if desired Grant support – Colorado Trust Grant (2000-2002) – CHI PACC Grant (2002-2004) Outcomes of grant support – Creation of Supportive Care Network – Aggressive marketing program – Creation of inpatient consultative service MD, PNP/Inpatient coordinator, Chaplains – Outreach Program – Educational programs in Denver metro area – 1915c waiver based on CHI-PACC model of care
    • THE BUTTERFLY TEAM Inpatient Coordinator Outpatient Coordinator Medical Director Home Care Nursing Spiritual Support (Inpatient and Outpatient) Social Work Bereavement Pharmacy/PT/OT/Dietary Volunteers/Creative Play Therapy
    • PATIENT DEMOGRAPHICS Program has accepted over 300 patients to date (outpt and inpt) Program enrolls 40-45 pts/year Patient diagnoses - Oncology (32%), Neurologic (33%), Muscular Degenerative Disorders (20%), Cardiac/Pulmonary (15%) Length of Stay - 0-983 days Average Length of Stay – 93 days Expectation that average LOS will increase greatly following waiver implementation
    • CHILDREN’S HOSPICE INTERNATIONAL PACC Program for All Inclusive Care for Children and Their Families Goals – Comprehensive PPC for all children with life- threatening conditions and their families to include physical, nursing, emotional and spiritual support – From time of diagnosis – With hope for cure – Through extensive bereavement if cure not obtained
    • CHI PACC HISTORY Fall 1996 – CHI initiates partnership with Congress and CMS CHI PACC through CMS waivers (1915b, 1915c, 1115) – Allows child and family appropriate care from time of diagnosis with hope for cure 8 Demonstration Projects funded by Congressional appropriations – CO, KY, New England, NY, UT, VA, Department of Defense
    • ESTABLISHMENT OF A CHI PACC PROGRAM CHI PACC can be established by virtually any entity – Hospice – Home Care – Children’s hospital – Medicaid agency – Any entity willing and capable of providing the needed services
    • The Starting Point Colorado only one of two demonstration CHI-PACC projects clinically based Philosophy of The Butterfly Program very similar to CHI-PACC model of care with palliative care beginning earlier in the trajectory of a life-limiting illness Opening dialogue with state Medicaid office biggest hurdle particularly given staff availability and turnover at Medicaid
    • A Door Opens… In June 2003, The Children’s Hospital hosted “Children’s 101” allowing business as well as state and city leaders a chance to spend a day shadowing hospital personnel Executive Director of Medicaid given opportunity to spend time in Oncology Discussion begins regarding a state Medicaid waiver for PPC “Buy in” of Medicaid Executive Director; establishment of core team at Medicaid office to being work on waiver process
    • Next Steps January 2004 – Colorado law requires passage of bill to begin work on any Medicaid waiver – Assistance of governmental affairs/waiver expert – Main goal – passage of bill by end of legislative session (May 2004)
    • Advocacy at the Legislative Level Assessment of political environment – Republican controlled House and Senate; clear with leadership, select R sponsors – Cost savings coupled with better care is top selling point Support/neutrality of Medicaid office and Governor’s office Support of Colorado Hospice Organization as well as other patient advocacy groups
    • Drafting of Bill First draft written by governmental affairs expert and legislative legal services Bill assigned to Health and Appropriations Committees in Senate and House Medical Director of The Butterfly Program discusses importance of such a waiver with key members of legislative committees Testimony by parents and health care providers regarding importance of pediatric palliative care waiver given before Health Committee
    • Declarations of the Bill Death of a child has devastating and enduring impact on the family Child with fatal conditions and their families often fail to receive compassionate consistent palliative care Better care is possible but current methods of organizing and financing palliative, end of life, and bereavement care impede the provision of services that are both more appropriate and more cost efficient
    • Declarations of the Bill Current federal Medicaid regulations contain inherent barriers to providing appropriate palliative and end of life care to pediatric patients. General Assembly declares that it is in the best interest of the state to investigate and implement hospice guidelines that provide appropriate, compassionate care to dying children and their families while being cost neutral or cost saving to the state and federal Medicaid programs Information and data produced as a result of this act shall be used to improve the delivery of palliative and end of life services to persons of all ages when improvements can be made in a manner that is cost neutral or cost saving to the state
    • Provisions of the Bill Respite care Expressive therapies Palliative care from the time of diagnosis of a potentially life-threatening illness and a continuum of care through the coordination of services which may include skilled, intermittent, and around the clock nursing care State department is authorized to seek federal approval for modifications to the provision of hospice care for adults eligible for Medicaid
    • Federal Medicaid Requirements Exemptions Mandatory DNR Physician’s certification that a patient is expected to live less than six months Non-allowance of curative care therapies concurrent with palliative and hospice care
    • Federal Waiver Preliminary fiscal analysis indicated potential cost savings to Medicaid of $20,000/year/ per patient based on five most common pt diagnoses in The Butterfly Program Cost savings analysis based on avoiding unnecessary ER visits and hospital admissions by having in place a “supportive care” program that pts and families have access to when needed SB 206 voted on 8 times in House and Senate, passes each; signed by Governor Owens in June 2004 Decision made to pursue a 1915c Home and Community Based Waiver
    • Federal Waiver Focus groups held at The Children’s Hospital – Department of Health Care Policy and Financing – Physicians (General Peds, Oncology, Special Needs, ICU) – Nursing – Bereaved parents – Hospice program directors from across CO Acknowledgement of the work of those who preceded us
    • Federal Waiver Identification of over 4000 children receiving Medicaid in CO who could potentially benefit from the 1915c waiver based on diagnoses categories; initially 200 children to be enrolled “Wish list” for items in CO waiver – Emotional support services to be available from time of dx through cure or death/bereavement – Respite care – Bereavement for families – Availability of curative therapies based on wishes of family even if child is not expected to survive illness – Availability of expressive therapies (music, art, child life) – Assurance to families of continuum of care and timely coordination of services Submission of CO 1915c – March 16th, 2006 (90 day turnaround)
    • Federal Waiver Waiver approved in late January 2007 Specific regulations of waiver being worked on presently On target for January 2008 implementation Patience very important when working towards a waiver (6 year process for CO) Colorado PACC work on Medicaid waiver demonstrates proof that such waivers can be championed by clinicians and other patient care providers
    • Future Goals Redefine benefit package Assess cost data Expand population eligible for Colorado waiver Advocate for permanent state and federal change
    • The New Children’s Hospital
    • Questions?