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The Child’s Right to Palliative Care: The Next Horizon for Pediatrics

This event explores the history and future opportunities of pediatric palliative care, grounded in child rights and providing a model for practice. Join us in making history.

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The Child’s Right to Palliative Care: The Next Horizon for Pediatrics

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  1. The Child’s Right to Palliative Care: The Next Horizon for Pediatrics Hong Kong Society of Pediatric Palliative Care Jeffrey Goldhagen, M.D., MPH June 16, 2017

  2. Inaugural Event

  3. Hong Kong Society of Children’s Palliative Care

  4. Agenda • Trace the history of Pediatric Palliative Care • Establish Pediatric Palliative Care as the next developmental stage of pediatrics and pediatric practice • Ground the practice of PPC in the principles and practice of Child Rights • Present a model for practice • Discuss opportunities for the future

  5. You Get to Make History

  6. Gravitational Waves

  7. Definition of Insanity

  8. Paradigm Change

  9. History of medicine is the history of incremental paradigm changes

  10. Evolution of Pediatrics

  11. Evolution of Pediatrics

  12. Evolution of Pediatrics Public and Population-based Health

  13. Evolution of Pediatrics Public and Population-based Health Declaration of Human Rights WHO Definition of Health

  14. Evolution of Pediatrics Hospice Movement Declaration of Alma Ata

  15. Evolution of Pediatrics UN Conventions Rights of the Child and People with Disabilities Hospice Movement Declaration of Alma Ata

  16. Evolution of Pediatrics Hospice Movement Declaration of Alma Ata UN Conventions Rights of the Child and People with Disabilities WHO definition of Palliative Care

  17. Evolution of Pediatrics Hospice Movement Declaration of Alma Ata UN Conventions Rights of the Child and People with Disabilities WHO definition of Palliative Care Hong Kong HKSCPC

  18. World Health Organization Definition of Health “State of complete physical, mental, and social well being, and not merely the absence of disease or infirmity.” Preamble to the Constitution of WHO as adopted by the International Health Conference, New York, signed, 22 July 1946 by 61 States

  19. Complex Care Complex Care is a part of the health services continuum designed to provide medical management, skilled nursing and a range of interdisciplinary, diagnostic, therapeutic and technological services to achieve patient identified goals and optimize the quality of life of individuals who have a chronic complex condition

  20. WHO Definition of Palliative Care An approach that improves the quality of life of patients and their families facing the problems associated with serious illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

  21. Hospice Care Hospice care is a type of care and philosophy of care that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs.

  22. What is Pediatric Palliative Care

  23. Palliative Care is a Child Right It is fundamental to health and human dignity and is a basic human right. It can and should be provided alongside curative treatment that begins at the time of diagnosis. Open Society In order to fulfil obligations under international human rights law, governments should remove unnecessary barriers facing patients who need access to palliative care. The International Covenant on Economic, Social and Cultural Rights, requires that governments act expeditiously to ensure access to palliative care and pain medicines. Human Rights Watch Palliative care is part of the right to health as recognised by the United Nations. Under this right, Governments must ensure that their citizens have access to “preventative, curative and palliative health services” (CESCR, 2000). However, these rights are all too seldom realised. E-Hospice

  24. The CRC: An overview • Adopted by the UN in 1989 • Encompasses civil, political, economic, social and cultural rights i.e. holistic • Recognizes children as rights-holders: active participants with evolving capacity to make decisions about their lives • 2017: Universal ratification except US

  25. UN Convention on the Rights of the CHild Four Principle Rights in the UNCRC • Article 2. Non Discrimination • Article 3. Best Interests of the Child • Article 6. Optimal survival and development • Article 12. To be heard and listened to Article 23. The right of children with disabilities Article 24. The right to optimal health and health care Principle: Interdependent and Indivisible

  26. Health in the Convention on the Rights of the Child Indivisible Inalienable General human rights principles Universal Source: Adapted from WHO, 2010

  27. Three Domains of Child Advocacy

  28. The Right to Health: Clinical Domain

  29. The Right to Health: Systems Domain

  30. The Right to Health: Policy Domain

  31. A Rights-based ApproachIllustrative Example

  32. Systems Approach to the Care of Children with Complex Medical Conditions

  33. Systems and Population-basedApproach to Pediatric Complex and Palliative Care • In the public health and policy domains • In the institutional and systems domains

  34. The Bower Lyman CenterFor Children with Complex Medical and Mental Health Conditions • Medically Complex Clinic • Pediatric Medical Home for Chronic Complex Medical Conditions • Outpatient Clinic • Inpatient Consults • CMMI Grant • Wraparound Services • Physical Medicine & Rehabilitation • Pediatric Specialty Practice for Children with Physical Impairments or Disabilities • Spasticity Clinic • Neuroscience Clinic • Spinal Defects Clinic • Tumor Clinic • Botox Injections • Baclofen Pump Management • Inpatient Consults • Brooks Consults • NICU Consults • Wraparound Services • Outreach Services – Lake City & Daytona • Pediatric Wellness Center • Pediatric Medical Home for Complex Mental Health Conditions • Outpatient Clinic • Inpatient Consults • Wraparound Services • SOCI Expansion Grant UF Pediatrics Division of Community & Societal Pediatrics • Jacksonville Health & Transition Services (JaxHATS) • Medical Home for Transition Age Youth with Chronic Complex Medical Conditions • Outpatient Clinic • Inpatient Consults • Wraparound Services • FL HATS & NE FL HATS Coalition • LGBTQIA+ Care

  35. Official AAP website of “Medical Home” https://medicalhomeinfo.aap.org

  36. Medically Complex Clinic • Clinic Hours Monday through Friday 8 am until 5 pm • 24/7 call by medical provider • Scheduled office visits • Walk-in office visits • Continuous collaboration with all partners in community • ED • Inpatient physicians • PPECs • Home Nursing Agencies • Schools • Community PedsCare

  37. Nursing • Needs Assessment • Case Management • Teaching • Transition • Collaboration Social Work Physician • Psychosocial needs of patient and family • Therapeutic counseling to patient, caregiver, siblings, family members • Navigating through the healthcare system • Provide information on and completion of advanced directives being sensitive that wishes may change • Community support & resources • Transition • Bereavement • Pain and symptom management • Collaboration with other providers • Assume primary care physician role for hospice patients • Teaching Child & Family Chaplain • Purpose and meaning, decrease suffering • Spiritual • Decrease suffering • Connect with community • Conduct funerals and memorial services • Offer bereavement support Child Life • Therapeutic play • Art/craft/game activities for patient, siblings • Interventional support to children • Addressing emotional difficulties • Promote growth & development Components of the IDT

  38. Goals of the Interdisciplinary Team (IDT) • Plan of Care: Patient/family as the unit of care • Management of the patient's medical condition • Prevent crises • Collaboration with other providers • Reinforce prognosis and reasonable expectations • Educate • Advance care plans • EOL care • 24/7 support and access to care *IDT member roles often overlap-i.e. all members assess for pain

  39. Opportunity

  40. HKCH: A Child Rights Respecting Hospital

  41. Hong Kong System of Care for Children with Complex Medical Conditions • HKCH Medically Complex Clinic • Medical Home for Chronic Complex Medical Conditions • Linkage to subspecialty services • Linkage to community-based teams • Linkage to special Schools • Tele-health capabilities • Education and research • Regional Pediatric Complex Care Clinics • System of regional complex clinics in hospitals linked to subspecialty services • Linkages to Community-based teams and services • Linkages to Special Schools • Community-Based Teams and Special School Services • Interdisciplinary Teams • Linked to Regional MCC Hong Kong Children’s Hospital • Transition Services • Medical Home for Transition Age Youth • with Chronic Complex Medical Conditions • Outpatient Clinic • Inpatient Consults • Wraparound Services

  42. HKCH Training Institute for Complex and Palliative Care

  43. HKCH Research Institute for Pediatric Complex Care

  44. Research Findings

  45. Research Findings

  46. SWOT: Strengths • The opportunity the new children’s hospital provides to develop an integrated system of care • Vision and Commitment • Palliative care teams exist in the HA hospitals. They provide a precedent for developing services. • Commitment to build a Pediatric Palliative Care team • Recognition of the difference between pediatrics and adult palliative care • Recognition for the need to provide longitudinal care for children • Identified “communication, conflict resolution and management as critical issues • Recognition of the family as being the focus of the PPC team • Recognition of the need to “empower… greater participation in the decision-making process. • Strategic framework document • Single service territory-wide • Linkage with NGOs, with a common agenda

  47. SWOT: Weaknesses • Need foundational structure, e.g., child rights foundation • Lack of IDT • Training for interdisciplinary professionals • Limited involvement of families and youth as decision makers • Hospital centric approaches • See no mention of mental health • Need Medical Home for Children with Complex Medical Conditions • Need to develop perinatal and transition programs • Need legislation on Advanced Directives • EOL delivery location-regulation by the Fire Services Ordinances • Underestimating the importance of role of SW in palliative care

  48. SWOT: Opportunities • Home visiting nurse program provides a foundation to build an IDT • Expand the Medical Complexity Community Support Program to include multiple specialties • To build the system de novo. • To establish a training institute • Preponderance of deaths in the neonatlinked to Jacksonville programs • Telehealth • Parent and child voices to identify gaps they identify in providing care to their child inside and outside of the hospital setting – parents are the strongest advocates for change • Recognize the value of advance directives for patients under the age of 18

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