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Liam Robert Lawson April 7, 2001 – October 2, 2003

Liam Robert Lawson April 7, 2001 – October 2, 2003. Pediatric Palliative Homecare via Telepal.org. Annette O’Brien, B.S., R.N. Grandmother, Founder & President. Katey Lawson, R.N. Mother & Vice President. Liam’s Foundation for Pediatric Palliative Care. www.liamsfoundation.org.

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Liam Robert Lawson April 7, 2001 – October 2, 2003

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  1. Liam Robert Lawson April 7, 2001 – October 2, 2003

  2. Pediatric Palliative Homecare via Telepal.org Annette O’Brien, B.S., R.N. Grandmother, Founder & President Katey Lawson, R.N. Mother & Vice President Liam’s Foundation for Pediatric Palliative Care www.liamsfoundation.org

  3. Introduction • Who we are • As nurses, we are familiar with hospital culture • Advocates for choice • You have seen Liam’s story as told to Ken Doka from the Hospice Foundation of America • This video is used with the permission of HFA, all rights reserved

  4. What are the main issues? • Palliative Care, as a medical option, is not routinely introduced • System-specific interventions and treatments that were fragmented and uncoordinated in nature • No unified or coordinated plan of care

  5. What are the main issues? (cont.) • No referrals or menu to “helpful” resources (e.g. bereavement counseling) • Too “one size fits all” • Responsible vs. responsive • No team approach between medical professionals and the family • “Just bring him in” • Minimal regard to burdens on child and family

  6. Patient needs that can be met via the Telemedicine Model • Access to Palliative Care from the time of diagnosis without time constraint • Continuous pain assessment and management • Coordinated healthcare provided in a timely, convenient and pleasant environment • Continuum of care • Family-focused care • Unlimited access to family as desired by the child • Parent support so that they can focus on the child and siblings as much as possible • Spirituality in their care plans Source: Journal of Hospice & Palliative Medicine (July/August 2005)

  7. Telemedicine and Pediatric Palliative Care via Telepal.org • What are the clinical features of the children who could benefit from Telepal.org? • The target population should be Service specific as opposed to diagnosis specific  • The more important question is:  What types of services does this child or family need?

  8. What are the potential uses for Telepal.org? • Clinical Visits • Unscheduled or scheduled routine visits to nurses and/or doctors • Address family questions in a timely fashion (e.g. use of OTC meds) • Support Services • Counseling, individual or family; sibling support opportunities • Spiritual; Support group meetings

  9. What are the potential uses for Telepal.org? • Troubleshooting • Feeding tube malfunctions; suctioning/trach care; skin issues; positioning; system assessments; bladder catheter, etc. • Training and Education • Videos could be disease or condition specific. • Films developed should include basic information using non-medical terminology

  10. The current system Home-based Palliative Care Hospital Satellite Specialty Clinic Community-based Early Intervention Home-based Hospice Community Pediatrician = Referral Path

  11. Telemedicine Capability: Available at all levels Hospital Palliative Care Satellite Specialty Clinic Home-based Palliative Care Community-based Early Intervention Home-based Hospice Community Pediatrician = Referral Path The ideal flexible system

  12. Standard Home-based Pediatric Palliative Care • Home-based Pediatric Palliative Care via • Telemedicine Program Rollout Hospital = Referral Path

  13. Continuity of Care Model Region 1:one-on-one Region 3:one-on-one Region 2:one-on-one Telepal.org

  14. Continuity of Care Model • Advantages • Patient satisfaction with expedient response • Time saved for nursing professional and family • Family will feel support and more a part of the process • Weather, traffic, etc. no longer an issue • Appointments will not be cut short due to unforeseen circumstances • Time will not be taken from one patient in order to see another

  15. Be a Part of Liam’s Legacy

  16. “Life is measured not by the number of breaths you take, but by the number of breaths you take away.” Anonymous

  17. “…to add life to the child’s years, not simply years to the child’s life.”American Academy of Pediatrics

  18. For more information • Online: www.liamsfoundation.org • E-mail: friends@liamlawson.org

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