module 4: ethical/legal issues in pediatric palliative care end-of-life nursing education consortium...
TRANSCRIPT
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Module 4:Ethical/Legal Issues in Pediatric Palliative Care
End-of-Life Nursing Education Consortium
Pediatric Palliative Care
Pediatric Palliative Care
CCEENNLLEE
CCEENNLLEE
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Pediatric Palliative CareCCEENNLLEE
Ethics in Pediatric Palliative Care
What ought to be Determining the best course of
action Ethical issues are inevitable Societal changes
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Pediatric Palliative CareCCEENNLLEE
Nurses Role in Addressing Ethical Issues
Promoting family-centered care Respecting preferences Role models of clinical
proficiency, integrity and compassion
Balancing competing objectives
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Pediatric Palliative CareCCEENNLLEE
Standards of Professional Nursing Practice
ANA Code of Ethics
Nurse Practice Act
Standards for professional organizations
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Pediatric Palliative CareCCEENNLLEE
Issues of Decision-Making and Communication
Capacity Consent Assent Confidentiality
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Pediatric Palliative CareCCEENNLLEE
A Mother's Touch
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Pediatric Palliative CareCCEENNLLEE
Issues of Decision-Making and Communication (cont.)
Disclosure Previous belief in not discussing
diagnosis Explore reasons for not disclosing The CHILD’S right not to know
Hinds et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Ethical Issues in Palliative Care
Prolongation of life Curative intent Acute therapeutic care Life sustaining treatments (LST)
Jonsen et al., 2006; Prince-Paul & Daly, 2010
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Pediatric Palliative CareCCEENNLLEE
Ethical Issues in Palliative Care (cont.)
Withholding/withdrawing of medical interventions Balancing benefits and burdens Withdrawal of treatment is not
withdrawal of care
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Pediatric Palliative CareCCEENNLLEE
Ethical Issues in Palliative Care (cont.)
Withholding/withdrawing of medical interventions (cont.)
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Pediatric Palliative CareCCEENNLLEE
Ethical Issues in Palliative Care (cont.)
Do Not Resuscitation (DNR) Allow Natural Death (AND) Medical Futility
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Pediatric Palliative CareCCEENNLLEE
Ethical Issues in Palliative Care (cont.)
Assisted suicide Euthanasia
Darr, 2007; Ersek, 2005
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Pediatric Palliative CareCCEENNLLEE
Principle of Double Effect
An ethically permissible effect can be allowed, even if the ethically undesirable one will inevitably follow.
Jonsen et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Issues of Justice in Palliative Care
Provision of quality palliative care
Costs of palliative care
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Pediatric Palliative CareCCEENNLLEE
Research In Pediatric Care
Is research appropriate?• Informed consent
National Commission for Protection of Human Subjects
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Pediatric Palliative CareCCEENNLLEE
Facilitating Ethical and Legal Practice
The 4 Box Method
Quality of Life
Patient Preferenc
es
Medical Indication
s
Contextual
Features
Jonsen et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Medical Indications
Indications for and against the intervention
Reflect the goals of care
Common ethical dilemmas
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Pediatric Palliative CareCCEENNLLEE
Child and Family Preferences
Principle of respect for persons Autonomy, privacy, veracity
Assess child/family understanding
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Pediatric Palliative CareCCEENNLLEE
Advance Care Planning
Process of decision-making and communicating about goals of care
Nurses role in assessing and interpreting wishes for care
POLST
Hinds et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Advance Care Planning (cont.)
Decreases chance of conflict An ongoing, dynamic process Cultural, ethnic and age related
differences
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Pediatric Palliative CareCCEENNLLEE
Advance Care Planning (cont.)
Advance Directives—Written method for child and family to plan and communicate choices
Less common in pediatrics State statutes differ My Wishes
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Pediatric Palliative CareCCEENNLLEE
Advance Care Planning (cont.)
Child Life Specialists Social Workers Hospices
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Pediatric Palliative CareCCEENNLLEE
Authority of Parents
Children are deemed legally capable of consent at age 18
Challenge of determining relevance and weight of parental and patient preferences
Jonsen et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Standard for Parental Preferences
Parents as moral and legal agents
Parents evaluation of treatment efficacy or futility
Instances of parent and physician conflict
Jonsen et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Quality of Life (QOL)
Evaluation of prior QOL
Expected QOL with and without treatment
Common ethical dilemmas addressing QOL
Jonsen et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Contextual Features
Social, legal, economic and institutional circumstances
Common ethical dilemmas
Jonsen et al., 2010
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Pediatric Palliative CareCCEENNLLEE
Managing Disagreement
Parent – child conflict Minors Legal issues, etc.
Field & Behrman, 2003
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Pediatric Palliative CareCCEENNLLEE
Managing Disagreement (cont.)
Parent – parent conflict
Parent – physician conflict
Field & Behrman, 2003
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Pediatric Palliative CareCCEENNLLEE
Parental Insistence on Treatment
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Pediatric Palliative CareCCEENNLLEE
Organizational Ethics & Legal Practices
Organizational ethics
Ethics committees and consultation Education Policy development Case consultation
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Pediatric Palliative CareCCEENNLLEE
Conclusion
Engage in a process of ethical discernment
Apply principles of ethics Use ethical process to seek
balance in decision-making Advocate for children and families
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Pediatric Palliative CareCCEENNLLEE
Little Sister