module 4: ethical/legal issues in pediatric palliative care end-of-life nursing education consortium...
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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
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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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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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Standards of Professional Nursing Practice
ANA Code of Ethics
Nurse Practice Act
Standards for professional organizations
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Issues of Decision-Making and Communication
Capacity Consent Assent Confidentiality
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A Mother's Touch
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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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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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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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Ethical Issues in Palliative Care (cont.)
Withholding/withdrawing of medical interventions (cont.)
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Ethical Issues in Palliative Care (cont.)
Do Not Resuscitation (DNR) Allow Natural Death (AND) Medical Futility
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Ethical Issues in Palliative Care (cont.)
Assisted suicide Euthanasia
Darr, 2007; Ersek, 2005
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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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Issues of Justice in Palliative Care
Provision of quality palliative care
Costs of palliative care
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Research In Pediatric Care
Is research appropriate?• Informed consent
National Commission for Protection of Human Subjects
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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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Medical Indications
Indications for and against the intervention
Reflect the goals of care
Common ethical dilemmas
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Child and Family Preferences
Principle of respect for persons Autonomy, privacy, veracity
Assess child/family understanding
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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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Advance Care Planning (cont.)
Decreases chance of conflict An ongoing, dynamic process Cultural, ethnic and age related
differences
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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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Advance Care Planning (cont.)
Child Life Specialists Social Workers Hospices
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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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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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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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Contextual Features
Social, legal, economic and institutional circumstances
Common ethical dilemmas
Jonsen et al., 2010
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Managing Disagreement
Parent – child conflict Minors Legal issues, etc.
Field & Behrman, 2003
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Managing Disagreement (cont.)
Parent – parent conflict
Parent – physician conflict
Field & Behrman, 2003
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Parental Insistence on Treatment
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Organizational Ethics & Legal Practices
Organizational ethics
Ethics committees and consultation Education Policy development Case consultation
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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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Little Sister