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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
Buttons:
Care: The Next Horizon for Pediatrics
Hong Kong Society of
Pediatric Palliative Care
Jeffrey Goldhagen, M.D., MPH
2
June 16, 2017

2 Inaugural Event Cancel Download

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
Abraham Jacobi
Established Pediatrics
Grounded Pediatrics in social systems
Abraham Flexner
1912
Issued Report establishing medicine as a profession
Chasm Medicine and Public Health
AAP and Board
1930 and 1933
Responded to Sheppard Towner Act
Grounded in precedent of medicine
Vaccines Antibiotics ’s
New discoveries fueled biomedical and hospital practice of pediatrics
 11 Evolution of Pediatrics
General 
Download presentation
Infectious diseases
Nutrition
Psychosocial We think you have liked this presentation. If you wish to
Behavior download it, please recommend it to your friends in any social
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Adolescent Med
Prevention Buttons:
Community
Environment
Mental Health
School Health 2
Drugs, ETOH, STIs
Complex Care and Societal, 2000-
Care of children with complex conditions
Cancel Download
Social determinants of health

12 Evolution of Pediatrics
Public and Population-based Health
Abraham Jacobi
Established Pediatrics
Grounded Pediatrics in social systems
Abraham Flexner
1912
Issued Report establishing medicine as a profession
Chasm Medicine and Public Health
AAP and Board
1930 and 1933
Responded to Sheppard Towner Act
Grounded in precedent of medicine
Vaccines Antibiotics ’s
New discoveries fueled biomedical practice of pediatrics

13 Evolution of Pediatrics
Public and Population-based Health
Declaration of Human Rights
WHO Definition of Health
Abraham Jacobi
Established Pediatrics
Grounded Pediatrics in social systems
Abraham Flexner
1912
Issued Report establishing medicine as a profession
Chasm Medicine and Public Health
AAP and Board
1930 and 1933
Responded to Sheppard Towner Act
Grounded in precedent of medicine
Vaccines Antibiotics ’s
New discoveries fueled biomedical practice of pediatrics

14 Evolution of Pediatrics
Download presentation

General
Infectious diseases
Nutrition We think you have liked this presentation. If you wish to
Psychosocial download it, please recommend it to your friends in any social
Behavior system. Share buttons are a little bit lower. Thank you!
Development
Adolescent Med Buttons:
Prevention
Community
Environment
Mental Health 2
School Health
Drugs, ETOH, STIs
Complex Care
Cancel Download
2000-
Care of children with complex conditions
Social determinants of health
Hospice Movement Declaration of Alma Ata

15 Evolution of Pediatrics
General
Infectious diseases
Nutrition
Psychosocial
Behavior
Development
Adolescent Med
Prevention
Community
Environment
Mental Health
School Health
Drugs, ETOH, STIs
Complex Care
2000-
Care of children with complex conditions
Social determinants of health
Hospice Movement Declaration of Alma Ata
UN Conventions Rights of the Child
and People with Disabilities

16 Evolution of Pediatrics
General
Infectious diseases
Nutrition
Psychosocial
Behavior
Development
Adolescent Med
Prevention
Community
Environment 
Mental Health Download presentation
School Health
Drugs, ETOH, STIs
Complex and Societal, 2000-We think you have liked this presentation. If you wish to
PPC boarded subspecialty download it, please recommend it to your friends in any social
system. Share buttons are a little bit lower. Thank you!
Social determinants of health
Hospice Movement Declaration of Alma Ata
Buttons:
UN Conventions Rights of the Child
and People with Disabilities
WHO definition of Palliative Care
2

17 Evolution of Pediatrics
General
Cancel Download
Infectious diseases
Nutrition
Psychosocial
Behavior
Development
Adolescent Med
Prevention
Community
Environment
Mental Health
School Health
Drugs, ETOH, STIs
Complex and Societal, 2000-
PPC boarded subspecialty
Social determinants of health
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 improvesDownload
the quality presentation
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 otherWe
problems,
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21 Hospice Care
Hospice care  is a type of Buttons:
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.
2

22 WHO Health
Complex Care
Palliative Care Cancel Download
Hospice

23 What is Pediatric Palliative Care

Palliative Care is not End of Life Care
Palliative Care is a philosophy and approach to the care of all medically complex
children
Palliative Care is about Quality of Life
Palliative Care saves resources

24 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

25 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
Aspirational
Yes, other countries, even HIC do not address all 40 substantive rights. You do a
great job describing this
 26 UN Convention on the Rights of the CHild
Four Principle Rights in the Download
UNCRC 
presentation
Article Non Discrimination
Article Best Interests of the Child
Article Optimal survival andWe development
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Article 12. To be heard and download
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Article The right of children system.
with disabilities
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Article The right to optimal health and health care
Principle: Interdependent and Indivisible
Buttons:

27 Health in the Convention on the Rights of the Child

General human rights principles 2
Universal
Indivisible
Inalienable Cancel Download
Source: Adapted from WHO, 2010

28 Three Domains of Child Advocacy

Policy
Community
Clinical

29 The Right to Health: Clinical Domain

Evolving Capacities Respected
Article 5
Listened to and Views Taken Seriously
Article 12
Privacy and Respect for Confidentiality
Article 16
Non-discrimination in individual treatment or attitudes
Article 2
Need to add the rights from the previous slide into this format

30 The Right to Health: Systems Domain

All appropriate services must be AVAILABLE
Services must be ACCESSIBLE to all without discrimination
Services must be culturally ACCEPTABLE to all children
Services must be APPROPRIATE of the highest possible quality

31 The Right to Health: Policy Domain

Adequate resources to support palliative care
Removal of barriers to being at home
Clinicians as advocates
Secure and safe environments
 32 A Rights-based Approach Illustrative Example
A child with a complex medical conditionpresentation 
Download
The right to speak out and be heard
The right to respect for privacy and confidentiality
The right to family life We think you have liked this presentation. If you wish to
The right to optimal health and development
download it, please recommend it to your friends in any social
The right not to be discriminated against
system. Share buttons are a little bit lower. Thank you!
Right to health care and treatment including palliative care
Imperative to structure a holistic,
Buttons:rights based response – medical interventions
alone are insufficient. As are fragmented institutional responses.
The right to speak out and be heard – denial of the right to be heard has
contributed to continuing systemic abuse against children – evidence from
repeated inquiries demonstrates that silencing of children a major factor 2 in
sustained abuse and impunity for abusers
The right to respect for privacy and confidentiality – the lack of safe spaces to
speak in confidence deters children from seeking help – obviously need
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boundaries on confidentiality, depending on level of risk and implications for
other children, but respect for the child’s views and
The right to family life and to family support - too often the response is to remove
the child – denies the child her family. Also recognition that problem can often be
addressed through support to family rather than removal of child
The right to be safe from violence – bottom line is the right to protection from all
forms of violence including corporal punishment.
The right not to be discriminated against – important not to differentiate on
grounds of cultural difference. Eg accepting FGM, harsh physical punishment as a
culturally acceptable practice. All children have the same rights.

33 Systems Approach to the Care of Children with Complex Medical

Conditions

34 Systems and Population-based Approach to Pediatric Complex and

Palliative Care
In the clinical domain
In the public health and policy domains
In the institutional and systems domains

36 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
Pediatric Wellness Center
Pediatric Medical Home for Complex Mental Health Conditions
Outpatient Clinic
Inpatient Consults
Wraparound Services
SOCI Expansion Grant
Physical Medicine & Rehabilitation
Pediatric Specialty Practice for Children with Physical Impairments or Disabilities
Spasticity Clinic
Neuroscience Clinic 
Spinal Defects Clinic Download presentation
Tumor Clinic
Botox Injections
Baclofen Pump Management We think you have liked this presentation. If you wish to
Inpatient Consults download it, please recommend it to your friends in any social
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NICU Consults Buttons:
Wraparound Services
Outreach Services – Lake City & Daytona
UF Pediatrics
Division of Community & Societal Pediatrics 2
Jacksonville Health & Transition Services (JaxHATS)
Medical Home for Transition Age Youth with Chronic Complex Medical Conditions
Outpatient Clinic
Inpatient Consults Cancel Download
Wraparound Services
FL HATS & NE FL HATS Coalition
LGBTQIA+ Care

37 Official AAP website of “Medical Home”

38 Medically Complex Clinic

3 Physicians 1 ARNP
2 Nurse Care Coordinators
2 Medical Social Workers
1 Triage Nurse
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

39 Child Life Nursing Social Work Physician Chaplain

Therapeutic play
Art/craft/game activities for patient, siblings
Interventional support to children
Addressing emotional difficulties
Promote growth & development
Child & Family
Nursing
Needs Assessment
Case Management
Teaching
Transition
Collaboration 
Social Work Download presentation
Physician
Pain and symptom management
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Collaboration with other providers
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Assume primary care physician it,hospice
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Psychosocial needs of patient and family
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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 2
Community support & resources
Transition
Bereavement
Chaplain Cancel Download
Purpose and meaning, decrease suffering
Spiritual
Decrease suffering
Connect with community
Conduct funerals and memorial services
Offer bereavement support
Components of the IDT

40 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

41 Hong Kong Children’s Hospital

Opportunity
Hong Kong Children’s Hospital
Child Rights Respecting Institution
System of Care for Children with Complex Medical COnditions
Institute for Training in Complex and Palliative Care
Research Center in Complex and Palliative Care

42 HKCH: A Child Rights Respecting Hospital

43 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 Download presentation
Tele-health capabilities
Education and research
Community-Based Teams and We Special
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Regional Pediatric ComplexButtons:
Care Clinics
System of regional complex clinics in hospitals linked to subspecialty services
Linkages to Community-based teams and services
Linkages to Special Schools
Hong Kong Children’s Hospital 2
Transition Services
Medical Home for Transition Age Youth
with Chronic Complex Medical Conditions
Outpatient Clinic Cancel Download
Inpatient Consults
Wraparound Services

44 HKCH Training Institute for Complex and Palliative Care

45 HKCH Research Institute for Pediatric Complex Care

46 Research Findings

47 Research Findings

48 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

49 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 Download
Directivespresentation
EOL delivery location-regulation by the Fire Services Ordinances
Underestimating the importance of role of SW in palliative care
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50 SWOT: Opportunities
Home visiting nurse program provides a foundation to build an IDT
Buttons:
Expand the Medical Complexity Community Support Program to include multiple
specialties
To build the system de novo.
To establish a training institute 2
Preponderance of deaths in the neonatlinked to Jacksonville programs
Telehealth
Parent and child voices to identify gaps they identify in providing care to their
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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

51 SWOT: Threats
Lack of understanding the differences: care of children with medical complexities
and palliative care
Focusing on children with “life threatening and life limiting illness” and those who
are dying
System is highly subspecialty oriented
Reliance on multiple NGOs to develop a system of care.
The complexity of developing a pediatric program is seen as a barrier, rather than
a challenge
Low demand being used as the reason for limited development—negates the
rights of children to have their best interests even considered.
The child as part of the family – parents’ voices need to be present at outset.
Identifying the need for PPC to be a subspecialty to get recognition in HK. PPC
should be developed as a primarily community and outpatient practice where
children who can benefit most
HK has a siloed structure based on the subspecialists.
Culture seen as a barrier. Death is taboo to talk about, death at home, lack of
autonomous behavior, lack of education to general population about palliative
care.
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