E L N E C Pediatric Palliative Care - THAICHILDHEALTH

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E L N E CPediatric Palliative CareEnd-of-Life Nursing Education ConsortiumModule 4:Ethical/Legal Issues inPediatric Palliative CareELNECPediatric Palliative Care

Responding to Ethical Issues Advances in medical technologyChildren as a vulnerable groupLack full maturity and legal authority to makedecisionsSocial changesIncreased fear of litigationMedical futility conceptLack of caregiversReimbursement for pediatric palliative careLack of knowledge of pediatric palliative care optionsUncertainty of prognosis in pediatric disease ELEthical issues are inevitableNECPediatric Palliative Care

Responding to Ethical Issues EL"Fight the good fight"Influence of values, culture,religionQuestions of meaningConflicts prevented bycommunication and shareddecision-makingNECPediatric Palliative Care

Nurses Role in AddressingEthical Issues ELPromoting family-centered careRespecting preferencesBeing knowledgeable about the ethical and legaldimensions of professional practiceRole models of clinical proficiency, integrity andcompassionBalancing competing objectivesLearning principles of pediatric palliative careWorking as a member of an interdisciplinary teamNECPediatric Palliative Care

Standards of ProfessionalNursing PracticeE ANA Code of Ethics Nurse Practice Act Standards for professionalorganizationsLNECPediatric Palliative Care

Issues of Decision-Making andCommunicationCapacity Ability to comprehend information,contemplate options, evaluate risks andconsequences, communicate decisionsConsent Legal term meaning willing acceptanceof an intervention after full descriptionof the interventionELNECPediatric Palliative Care

A Mother's TouchELNECPediatric Palliative Care

Issues of Decision-Making andCommunication (cont.) AssentIncorporates opinions of the child indecision-makingRequires team to disclose the planof care prior to decision-makingTreatment still depends on parent orguardian ConfidentialityHockenberry et al., 2003ELNECPediatric Palliative Care

Issues of Decision-Making andCommunication (cont.) DisclosurePrevious belief in not discussing diagnosiswith child Children have a right to be offereddevelopmentally appropriate informationabout their treatment optionsExplore parent reasons for not disclosingThe CHILD’S right not to know Right to decline information or to not knowBluebond-Langer, 1978ELNECPediatric Palliative Care

Ethical Issues in Palliative Care Prolongation of lifeCurative intentAcute therapeutic care Treating pneumonia in a dying childLife sustaining treatments Relief of symptomsProlonging sufferingJonsen et al., 2002;Stanley & Zoloth-Dorfman, 2006ELNECPediatric Palliative Care

Ethical Issues in Palliative Care(cont’d) Withholding/withdrawing of medical interventionsBurden outweighs benefitProlonging sufferingChild/family choicePoor quality of life Situations for withholding/withdrawingDeath by Brain criteriaIrreversible fatal conditionNo effective treatment availableNeonates ELNELethal abnormalitiesCPediatric Palliative Care

Ethical Issues in Palliative Care(cont.) ELDo Not Attempt ResuscitationRequires written order by MDFamily can change mind at any timeMedical FutilityConflicts regarding belief of the beneficialnature of a treatmentAsking the question – “For whom are wedoing this?” can avoid conflict situationsInstitutional policies regarding futilityNECPediatric Palliative Care

Ethical Issues in Palliative Care(cont.) Assisted suicideAdult issue EuthanasiaMore relevant to children thanassisted suicideIllegal in US ANA, 1994; Field & Cassel, 1997;Foley, 1995; Sulmasy, 1998ELNECPediatric Palliative Care

Principle of Double Effect An ethically permissible effectcan be allowed, even if theethically undesirable one willinevitably follow.Jonsen et al., 2002ELNECPediatric Palliative Care

Issues of Justice in PalliativeCare Provision of quality palliative careInequity in care delivery 56% of child deaths in hospital (US)Obstacles to accessLack of knowledge regarding pediatric palliative careResponsibility to provide bereavement Costs of palliative careCost effective optionQuality palliative care is a right for all people but thereare reimbursement issuesELNECPediatric Palliative Care

Research In Pediatric Care Is research appropriate?National Commission for Protection of SubjectsSound reasons for why research must be done withchildrenStudies should be done in adults before children, iffeasibleLevel of risk to the child must be carefully assessedResearch involving more than minimal risk andoffering no personal benefit requires special reviewInformed consent of parents/guardians requiredELNECPediatric Palliative Care

Best FriendsELNECPediatric Palliative Care

Facilitating Ethical and LegalPracticeThe 4 Box ityof LifeContextualFeaturesCPediatric Palliative CareJonsen et al., 2002

Medical Indications Indications for and against theinterventionReflect the goals of careCommon ethical dilemmasMedical futilityWithholding/withdrawing interventionsDNARCare of dying patientDetermination of deathELNECPediatric Palliative Care

Patient Preferences Principle of respect for personsAutonomy – person with decisional capacity has the moraland legal right to determine what will be done with theirown personPrivacy – right to privacy and the nurse acts to safeguardthat rightVeracity – the duty to be truthful Assess child/family understandingUnderstanding of medical condition and prognosisPrior preferences of childWhat are child and family hoping for and what would behelpfulELNECPediatric Palliative Care

Patient Preferences Advance Care Planning ELProcess of decision-making andcommunicating about goals of future careNurses role in assessing wishes for careAbility to have ongoing conversationswith children and families regardingpreferences and wishes for careNever to early to begin discussionsNECPediatric Palliative Care

Patient Preferences Advance Care Planning (cont.)E Decreases chance of conflict An ongoing, dynamic process Cultural, ethnic and age relateddifferencesLNECPediatric Palliative Care

Patient Preferences Living WillsE A less formal way tocommunicate advance directives Rarely used in pediatricsLNECPediatric Palliative Care

Praying for a MiracleELNECPediatric Palliative Care

Patient Preferences –Advance Directives Written method for child andfamily to plan and communicatechoicesLess common in pediatricsParents initiate directives ELState statutes differNECPediatric Palliative Care

Patient Preferences - Authorityof Parents Children are deemed legally capable of consent atage 18 Challenge of determining relevance and weight ofparental and patient preferencesPreferences conflict with the recommendations of theprovidersDetermining how reasonable and relevant child’spreferences areELNECPediatric Palliative Care

Patient Preferences - Standardfor Parental Preferences Parents as moral and legalagentsParents evaluation of treatmentefficacy or futilityInstances of parent andphysician conflictEthics consultationELNECPediatric Palliative CareJonsen et al., 2002

Quality of Life (QOL) Evaluation of prior QOLExpected QOL with and without treatmentCommon ethical dilemmas addressingQOLNutrition and hydrationWithhold/withdraw life support interventionsEuthanasiaSuicidePrinciple of double effect Jonsen et al., 2002ELNECPediatric Palliative Care

Contextual Features Social, legal, economic and institutionalcircumstancesFamily or provider issues affecting treatment decisionsFinancial/economic factorsCultural/religious factorsProblems with allocation of resourcesHow does the law affect treatment decisions?Conflict of interest on part of providers or institution Common ethical dilemmasResearch/Justice and allocation of resources/Economic issues/Confidentiality Jonsen et al., 2002ELNECPediatric Palliative Care

Managing Disagreement Parent – Child conflictSome states with minor treatment statutesEmancipated minorAdolescent-parent conflict Parent – Parent conflictPrior history of conflict will exacerbate whenchild at end of lifeAssessment of conflict historyMediation plays big roleField & Behrman, 2003ELNECPediatric Palliative Care

Managing Disagreement (cont.) Parent – Physician conflictParental refusal of treatment Religious conviction never a defense for life savingmeasureCriminal offense to not provide medical treatment to achildWhen cure is unlikely or impossible, courts allow forparents to make decisionsParental insistence on treatment ELNEMedical futilityEthics consultationCPediatric Palliative CareField & Behrman, 2003

Answering the Unanswerable QuestionsELNECPediatric Palliative Care

Organizational Ethics & LegalPractices Organizational ethicsMechanisms to respond to pain andsymptom management, advance careplanning, treatment cessation, andresource allocationEthics committees and consultationEducationPolicy developmentCase consultationELNECPediatric Palliative Care

ConclusionE Nurses need to engage in aprocess of ethical discernment Application of principles ofethics can assist in finding bestsolutionsLNECPediatric Palliative Care

Conclusion (cont.)E An ethical process is a way toseek balance in decision-making Nurses, working with otherdisciplines, advocate for childrenand familiesLNECPediatric Palliative Care

Little SisterELNECPediatric Palliative Care

L N E C Pediatric Palliative Care Issues of Justice in Palliative Care Provision of quality palliative care Inequity in care delivery 56% of child deaths in hospital (US) Obstacles to access Lack of knowledge regarding pediatric palliative care Responsibility to provid

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