Childhood Ethics PDF - McGill

Childhood Ethics Children, youth and families Franco A. Carnevale, RN, PhD(psych), PhD(phil) Nurse, Psychologist, Clinical Ethicist (Childen & Youth) Full Professor, McGill University Principal Investigator VOICE: Views On Interdisciplinary Childhood...

Childhood Ethics Children, youth and families Franco A. Carnevale, RN, PhD(psych), PhD(phil) Nurse, Psychologist, Clinical Ethicist (Childen & Youth) Full Professor, McGill University Principal Investigator VOICE: Views On Interdisciplinary Childhood Ethics Web: www.mcgill.ca/voice Twitter: @childethics Douglas Mental Health University Institute Le Phare, Enfants et Familles Shriner's Hospitals for Children (Canada) Montreal Children's Hospital - MUHC VOICE To what extent are resuscitative therapies justified? 7 year old girl with end-stage cancer Admitted to PICU on parents’ insistence that her life must be sustained Mechanical ventilation; hi-dose inotropic support; skin breakdown Hemodynamic instability Parents categorically object to limitation of chest compressions VOICE Do religious beliefs/values justify different clinical practices? 15 year old – multiple trauma Jehovah’s Witness – refuses blood products (along with mother) Hemodynamic instability Hgb: 85…..35…. VOICE Should we tell the truth even when it hurts? 12 yr old boy with metastasized cancer – has required surgery, radiotherapy, chemo – severely guarded prognosis Father insists that he should not be told diagnosis/prognosis – in their culture, this is parents’ burden to bear VOICE  Is there a basic obligation to provide food & water? 3 yr old girl underwent T&A Severe hemorrhage overnight – cardiopulmonary arrest Severe brain injury Two weeks later – breathing spontaneously; severe neurological injury (probable prognosis: severe disability – need at least 1 month to confirm prognosis) Parents insist that N/G nutrition/hydration be discontinued VOICE Understanding children’s vulnerability Children are disadvantaged Physically Psychologically Socially when to trust someone, whne to not trust someone Legally can't pursue their rights independently, need a suragate that act as their advokate VOICE Multiply Vulnerable Children Particularly vulnerable children (examples) – Disabled – Migrant newcomers – Mental health concerns – Low income/Poverty – LGBTQ2A – Cultural/religious/racial diversity – Newborns – Child welfare (youth protection) – Indigenous – Pediatric palliative care – Global child health VOICE Nursing children and families Ethical challenges VOICE Nursing children & families: Ethical challenges Which criteria determine whether therapies should be provided? Who should make such decisions? What about the voice of the child? What about confidentiality? when a child says something and asks not to tell the parents Considerations in pediatric palliative care Additional challenges VOICE Pediatric Ethical Norms (Canada) Treatment decisions regarding infants, children and adolescents Canadian Pediatric Society Position Statement, Feb. 2004, P&CH) All infants, children and adolescents – regardless of physical or mental disability - have dignity, intrinsic value, and a claim to respect, protection, and medical treatment that serves their best interests. childs best interest is foundational, all decision should be based by the child,s best interest In most cases, parents are appropriate surrogate decision makers for their children and should give primacy to the best interests of their child. who should be making decision about the child, person baring parental authorithy Children and adolescents should be appropriately involved in decisions affecting them. Once they have sufficient decision- making capacity, they should become the principal decision maker for themselves VOICE  Canadian Pediatric Society Position Statement (2018) Medical decision-making in paediatrics: Infancy to adolescence Children’s/ adolescents’ participation in medical decision-making should be sought in proportion to developmental capacity to understand nature & consequences of their medical problem and to reasonably foreseeable risks & benefits of treatment proposed HCPs & SDMs should be informed about, and act in accordance with, laws and regulations governing consent to treatment within their jurisdiction HCPs must provide patients and their SDMs with all the information they need to participate effectively in the decision-making process Assent/dissent should be respected whenever possible; it is recognized that in absence of capacity, minimizing harms & maximizing patient’s best interests is the priority HCPs, patients & families should work together to reach medical decisions based on the patient’s best interests or outcomes In cases of serious disagreement/competing interests, HCP’s primary responsibility is to the patient In complex social situations, a collaborative process should be agreed upon to clearly identify the SDM(s) in a timely fashion HCPs should be aware of conflict resolution process in place in their practice environment In situations of conflict, HCPs have an obligation to seek and access resources to help resolve that conflict & to facilitate patient and family access to such assistance as well Which criteria should determine whether therapies ought to be provided? Child’s Best Interests Proportional weighing of benefits and burdens benifits should be proportionaly greater than burdens But which benefits & burdens are most important? prolonging life Vs quality of life VOICE Who should decide which treatment is best? anyhealtcare professional has a duty of best care for best interestest, everyone decides what is in the best interest all the time, everytime we take a decision for more "big" decisions: CPR, cancer treatment or not Physicians? – Benevolent Medical Paternalism Parents?main agent who is authorized to decide for child, – Family/Parental Decisional Autonomy The child? Others? VOICE Nursing children & families: Ethical challenges What about the voice of the child? VOICE Listening to children’s voices A conception of the moral agency of children (Carnevale , 2012) Recognizing the voice and agency of young people – Consent (adapted) – Assent volountary collaboration, encourage to have assent VOICE Consent Civil Code of Quebec Minors 14. Consent to care required by the state of health of a minor is given by the person having parental authority or by his tutor. A minor 14 years of age or over, however, may give his consent alone to such care. If his state requires that he remain in a health or social services establishment for over 12 hours, the person having parental authority or tutor shall be informed of that fact. brief of conficiendality but in a narrow way, unless child is uncsious not capable of deciding for themselves VOICE Health Care Consent Act (Ontario) 1996, S.O. 1996, c. 2, Sched. A Capacity 4. (1) A person is capable with respect to a treatment, admission to a care facility or a personal assistance service if the person is able to understand the information that is relevant to making a decision about the treatment, admission or personal assistance service, as the case may be, and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision. child can make medical decision without parent or parents informed, Presumption of capacity if its they can take decision informed in their own interest (2) A person is presumed to be capable with respect to treatment, admission to a care facility and personal assistance services. Capacity depends on treatment 15. (1) A person may be incapable with respect to some treatments and capable with respect to others. VOICE Consent to Treatment: Minors College of Physicians and Surgeons of Ontario (Policy Statement #3-15) The test of capacity to consent to a treatment is not age-dependent and as such, physicians must make a determination of capacity to consent to a treatment for a minor just as they would for an adult. If a minor is capable with respect to a treatment, the physician must obtain consent from the minor directly even if the minor is accompanied by his or her parent(s) or guardian(s). can be oral concent VOICE  Health Care Consent Act (Ontario) 1996, S.O. 1996, c. 2, Sched. A definition of best interest Best interests (2) In deciding what the incapable person’s best interests are, the person who gives or refuses consent on his or her behalf shall take into consideration, (a) the values and beliefs that the person knows the incapable person held when capable and believes he or she would still act on if capable; (b) any wishes expressed by the incapable person with respect to the treatment that are not required to be followed under paragraph 1 of subsection (1); and (c) the following factors: 1. Whether the treatment is likely to, i. improve the incapable person’s condition or well-being, ii. prevent the incapable person’s condition or well-being from deteriorating, or iii. reduce the extent to which, or the rate at which, the incapable person’s condition or well- being is likely to deteriorate. 2. Whether the incapable person’s condition or well-being is likely to improve, remain the same or deteriorate without the treatment. 3. Whether the benefit the incapable person is expected to obtain from the treatment outweighs the risk of harm to him or her. 4. Whether a less restrictive or less intrusive treatment would be as beneficial as the treatment that is proposed. VOICE Consent & Children Exceptions for Parental Consent/Permission Mature minor (sufficient maturity to consent) more relevant in ontario law Emancipated minor (with adult rights – eg, married minor) Emergency treatment if parents are not present Court ordered treatment VOICE  Mature Minors What does that mean? does not exist in quebec because of the 14age decision making rights VOICE “Mature Minor” in Canadian Law Common Law concept No universally accepted definition Person under the age of majority with – Capacity to make an informed healthcare decision – Independence to make voluntary decision NB: Healthcare decision-making capacity of minors is not solely determined by age but tied to evolving maturity VOICE Listening to children who do not have consenting capacity A broad conception of assent even they they do not have the legal right to take decisionthey shouldn't be excluded on care, they should be respected as individual Attend to the moral voices of children while recognizing limits to the responsibility that they can assume Interpreting the standard of child assent more broadly. Assent implies 1. Optimizing the child’s understanding of his/her condition and proposed tests and treatments. 2. Seeking the child’s voluntary cooperation to the proposed care. (Carnevale 2012) VOICE Listening to children’s voices What about children whose voices are difficult to access? – Draw on innovative communication and interpretation strategies! VOICE Parents can help translate voices for some children Recognizing childhood agency as relationally embedded VOICE Nursing children & families Ethical challenges What about confidentiality? Between children & parents? Among team members? VOICE Treatment decisions regarding infants, children and adolescents Canadian Pediatric Society Position Statement, Feb. 2004, P&CH) All information presented to patients, families, or the child or adolescent’s legal guardian should be truthful, clear and presented with sensitivity. VOICE  Children need privacy too Respecting confidentiality in pediatric practice J. Noiseux, H. Rich, N. Bouchard, C. Noronha, F.A. Carnevale Paediatrics & Child Health (Canadian Paediatric Society) (2018) 13-yr-old girl presents to clinic for follow-up not considered leagally competent to take decision for themself Girl & family well-known at clinic Girl is often unaccompanied because father works 2 jobs & mother at home caring for 2 younger children Girl asks for contraception but adamantly states she does not want parents involved in discussion She feels certain that they would not support her choice She is confident and well-informed about engaging in a sexual relationship, and plans to do so soon, with what appears to be an “age-appropriate” partner VOICE Confidentiality Exceptions to Confidentiality Client consent/Waiver (autonomy) Court order (administration of justice) Statutory duty (protection of life) Public interest (protection from harm) VOICE  Confidentiality Conditions for Disclosure 1. Clear risk to identifiable person or group of persons 2. Serious risk of bodily harm or death 3. Imminent danger Extent of Disclosure Limited in proportion to imminent risks VOICE Nursing children & families Ethical challenges What special considerations are required for newborns? VOICE  Excessive & Dismissive Practices Newborns are children too! Excessively burdensome resuscitative therapies premature baby, congenital problem ect,, that cuases signifant health problems Developing standards for limiting treatment Pediatrics 2010; 126; e1400-1413 Are newborns sometimes less protected than older children with similar prognoses? Are newborns morally different from older children? (Janvier et al., 2007) Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? are they treated as full persons VOICE Nursing children & families Ethical challenges What about long-term disability? VOICE tjis children as signifant capacity to live their life at home if changes were made to help them Pediatrics, 2006 VOICE Quality of life of disabled children is commonly under-valued (& misunderstood) by adults confront our own judgement, is their life not worth being lived 9-year old girl ‘I think I will need it for a long time, a very long time. It helps me to breathe so I don’t care. It’s okay with me to have it.’ ‘It’s better to have it (tracheostomy and ventilator) than being dead.’ Carnevale et al (2006) 4½-year-old girl ‘My ‘pap’ [BiPAP] makes me happy. I really like my pap. The pap is good because it helps me to breathe.’ Earle, Rennick, Carnevale, Davis (2006) environment can unable/disable, be mindful of what we offer to those kids VOICE Nursing children & families Ethical challenges What about critical illness? VOICE Ethical Problems in Pediatric Critical Care Empirical uncertainty diagnosis uncertain especially in unstable period, after stabilization diagnostic and prognostic can become more clear – Diagnostic and prognostic imprecision Inescapable tragedy – Tragic choices: Choosing among bad options Lead to Disagreements, relational tensions & conflict Commonly leads to Moral Distress (Carnevale et al, 2011, 2012) VOICE Nursing children & families Ethical challenges What about inequities? VOICE Inequitable Childhoods: Call for ADVOCACY Disabled children: Major unmet needs causing serious health & social consequences (Canadian Council on Social Development) Hungry children: Rising use of food banks (CCSD) Migrant newcomer children: Inadequate access to required health & social services (Rousseau et al., 2008) Indigenous children: Increased serious health risks (e.g., increased rates of infant mortality, injury, smoking, etc.) (CCSD) GLOBAL child health: Devastating inequitable childhoods (World Health Organization) during covid, inequity have been amplified -school home: unhealthy family, can destroy friendships, arents work can be desctructed poverty= limit of technology at home, Nursing children & families Ethical challenges Pediatric Palliative Care VOICE  Pediatric Palliative Care Carnevale (2012). Ethical challenges in pediatric palliative care medicine. Médecine Palliative, 11, 246-251. Larcher & Carnevale (2012). Ethics. In A. Goldman, R. Hain, & S. Liben, Oxford Textbook of Palliative Care for Children 2nd Ed. (Eds.). Oxford: Oxford University Press, 35-46. Treatment decisions regarding infants, children and adolescents Canadian Pediatric Society Position Statement, Feb. 2004, P&CH Exceptions to duty to provide life-sustaining treatment when there is consensus: Irreversible imminent death Treatment clearly ineffective/harmful Limitation allows greater palliative care Unpreventable intolerable distress/suffering VOICE  Nursing children & families Ethical challenges Pediatric Palliative Care Is it permissible to administer medications that may shorten life? palliative sedation for example VOICE  Pediatric Palliative Care Is it permissible to administer medications that may shorten life? PALLIATIVE SEDATION: Principle of double effect Circumstances under which one may act in a way that has both good and badexample consequences (a "double effect"). high dose sedation (risk for vital signs) in palliative settings acceptable (benefit Four conditions: outweight the risk) reason should NOT be kill the person to allieviate pain, death is only a risk 1. The nature of the act is itself good or morally neutral; 2. The intention is for the good effect and not the bad; 3. The good effect outweighs the bad effect, the situation merits the risk of the bad effect (e.g., risking patient's death to manage intolerable pain); 4. The bad effect (e.g., death) is not used as a means to achieve the good effect (e.g., pain relief). VOICE  Nursing children & families Ethical challenges Pediatric Palliative Care Is it permissible to withdraw artificial nutrition and hydration? VOICE  Is it permissible to withdraw artificial nutrition and hydration? is a medical treatment so it can be stopped, needs to be weight into the child's best interest Withdrawing/Withholding Artificial Nutrition & Hydration “Although individuals may hold personal or professional reservations, withholding or withdrawing ANH is both legally and ethically permissible.” Withholding and withdrawing artificial nutrition and hydration. E Tsai; Canadian Paediatric Society, Bioethics Committee. Paediatr Child Health 2011;16(4):241-2. Also: Clinical report – forgoing medically provided nutrition and hydration in children.Diekema DS, Botkin JR; American Academy of Pediatrics, Committee on Bioethics. Pediatrics 2009;124:813-22. VOICE  Nursing children & families Ethical challenges Pediatric Palliative Care Medical Assistance in Dying: Implications for children & youth euthanasia is legal but NOT for children VOICE An Act respecting end-of-life care (Quebec: Bill 52; Law 2) In force: Dec 10 2015 for 18 years old and older VOICE  An Act respecting end-of-life care (Quebec: Bill 52; Law 2) KEY FEATURES Explicitly recognizes right to ‘end-of-life care’ – Applicable to minors Explicitly recognizes the ‘legality’ of palliative sedation – Applicable to minors even if it can compromise vital signs ‘Legalizes’ Advance Medical Directives – NOT Applicable to minors ‘Legalizes’ Medical Aid in Dying – NOT Applicable to minors VOICE Expert Panel on Medical Assistance in Dying (December 12, 2018) https://cca-reports.ca/wp-content/uploads/2018/12/The-State-of- Knowledge-on-Medical-Assistance-in-Dying-for-Mature-Minors.pdf this includes mature minors to read*** VOICE VOICE: Views On Interdisciplinary Childhood Ethics An integrated Research & Action Program VOICE  Listening to children’s voices Child-centered best interests – Children`s Rights informed – Evidence-informed Clinical evidence Research evidence Recognize the voice and agency of young people Advocate WITH young people for equity and social justice the child's own views, preference and experience young people are moral agent they have their own interpration, they must be included, must share their concerns be mindful of children's right; what rights are at stakes in the situaiton, and know the the children's rights VOICE  Recognizing children’s agency in governance & policy-making Participatory Models advocate WITH young people, not for them -what are their concerns, what are their equity/injustice concerns in their life -recignintion and respect of young people as agents VOICE  Strategies for reconciliation Ethics discussions when nursing review care, focus on identifying what are the key ethical – Nursing team cpncerns, and nurse is active in the ethical discussion, add their own observation – Inter-professional team Nursing ethics education Ethics consultations how do we ensure that every team has access to ethics teams/ ressources – Nursing team – Inter-professional team to get help on how to analyze certain situations, have access to an ethics committee VOICE Hermeneutical Rapprochement Framework (Carnevale 2017) aligned with childhood ethics how to analyse a specific situation Interpretive ‘retrieval’ of broader socio-historical- political horizons and imaginaries Reconciliatory ‘rapprochement’ of divergent views VOICE  Listening to children’s voices VOICE: Views On Interdisciplinary Childhood Ethics Website: www.mcgill.ca/voice Twitter: @childethics Email: [email protected] VOICE