2nd edition. p. ; cm. Preceded by Pediatric decision-making strategies to accompany Nelson Textbook of Pediatrics,. 16th ed. / Albert J. Pomeranz [et al.] . Designed to accompany Nelson Textbook of Pediatricsand Nelson Essentials of Pediatrics, Pediatric Decision-Making Strategies is a concise, user-friendly. Designed to accompany Nelson Textbook of Pediatrics and Nelson Essentials of Pediatrics, Pediatric Decision-Making Strategies is a concise, user-friendly.
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Health Care Consent Act, c. Authorization of the court is necessary, furthermore, to submit a minor 14 years of age or older to care that he refuses—except in emergency cases life is endangered or integrity threatened , when consent of a parent or tutor is sufficient.
An SDM or mandatary must have reached age of majority and be capable of performing the tasks assigned.
The Medical Consent of Minors Act provides that minors who are 16 years old may consent to medical treatment in the same manner as they would having attained the age of majority. Minors younger than 16 years old may consent to medical treatment if they are capable of understanding the nature and consequences of the treatment and their decision is consistent with their own best interests, continued health and well-being.
Any person with capacity to make decisions i. A person is presumed to have capacity unless the contrary is demonstrated. SDMs must be age of majority unless they are a spouse, in which case there is no age requirement. B , c M Any person who has the capacity to make a personal care decision able to understand relevant information and appreciate reasonably foreseeable consequences may make a personal directive.
SDMs must be age of majority unless the SDM is a spouse or partner, in which case there is no age requirement. Every person including minors capable i. Every person over the age of 16 years who is capable may make a health care directive.
Capacity is presumed until the contrary is demonstrated. Under the Advanced Health Care Directives Act, persons 16 years of age or older are presumed to be competent to make health care decisions, while persons younger than 16 years of age are not.
These presumptions can be rebutted with evidence to the contrary. A competent person may make an advance health care directive or appoint an SDM. Every person, including minors, who is capable i.
Capacity is therefore presumed unless demonstrated otherwise i.
A person is capable of making a directive if they are 16 years of age or older and able to understand the nature and effect of the directive. An adult 19 years of age or older may make a personal directive unless they do not understand the nature and effect of the directive. An adult is presumed to understand the nature and effect of a directive.
Under the Guardianship and Trusteeship Act, an adult is a person who is 18 years of age. Until the contrary is demonstrated, every adult is presumed to be capable of making decisions about their own health care, personal care and well-being. An interested party who is an adult, however, can apply to court to be appointed as a guardian, with power to make health care decisions for an incapable adult.
It should be noted that the authority of SDMs is not absolute. In most jurisdictions, their decision-making authority is limited to interventions deemed to be medically necessary.
In cases where medical necessity has not been established or a proposed treatment involves personal preference, intervention should be deferred until individuals are capable of making their own choice . Take time to explore the reasons behind treatment decisions, especially in cases where high emotional stakes are in play, such as end-of-life care.
When significant uncertainty surrounds a treatment or its outcome, attention should focus on minimizing associated harms. For example, when a cure for a particular condition is unlikely and the treatment is associated with significant harms or burdens, altering treatment goals to provide palliative care and improve quality of life in the time remaining may be an appropriate course.
In this Relational Autonomy-based model, the values and beliefs expressed by the patient and family can also be guided by the medical knowledge and experience of HCPs to determine and promote the best possible treatment for an incapable patient. This approach does not replace the primary authority of parents as SDMs.
Rather, it acknowledges the expertise and input of health care team members, while supporting decision-making authority within the family. In complex cases, additional discussion and consultation with experts in spiritual care, social work and bioethics add value to the decision-making process and help to ensure that the needs of all participants are met.
However, prolongation of life is not the primary goal of medical care and the use of such technologies must be considered in relation to the risks and benefits they provide to the paediatric patient.
Medical decision-making at the end of life should focus on maximizing patient comfort and minimizing associated harms. This milestone may be reached when: progression to death is imminent or irreversible, proposed interventions are ineffective or likely to result in greater harms than benefits, or interventions only prolong the dying process, and discontinuing them would allow for better provision of palliative care.
These decisions are always difficult and may be controversial due to their emotionally charged, value-laden nature. However, patients, families and HCPs may yet benefit in different ways from family-centred, shared decision-making.
There are, however, circumstances in which stopping feeding and hydration may be considered . The duty to provide appropriate palliative care and symptom management for the dying patient remains paramount throughout the end-of-life process.
Deeply held moral, religious or cultural beliefs sometimes contribute to conflict around medical decisions. Open communication is often key to resolving such issues. Participants should clearly identify the values contributing to conflict and discuss the goals of the proposed treatment. Early discussion around the expectations, limitations and uncertainties of treatment options and outcomes may help establish mutually agreeable treatment plans.
Some examples include disagreements between parents with joint custody, the wish of HCPs for life-saving transfusion of blood products for a child whose parents refuse based on cultural or religious beliefs  or, conversely, the desire of parents or guardians to continue life-sustaining interventions when there is little hope of reasonable recovery. In such cases and if circumstances permit, the proposed intervention should be delayed while an attempt at resolution is made in the current clinical setting .
Consulting with a spiritual care leader, social worker, patient relations expert, bioethicist or a bioethics committee, or with institutional or personal legal counsel, is often a useful step in complex cases. In such cases, consent will be given or withheld by a court.
In the event of a true emergency, where time does not permit an HCP to access the options described, the ethical principles of beneficence and nonmaleficence, as well as laws under the emergency doctrine, permit the provision of emergent life-sustaining interventions. In Ontario, for example, application can be made to the Consent and Capacity Board, a quasi-judicial body with limited but growing experience in paediatric consent cases .
In other jurisdictions, parents, guardians or physicians can request legal intervention.
In such cases, securing institutional and personal legal advice is a must. Being truthful and transparent throughout the process is vital to ensuring relations with the family and for meeting the best interests of the patient.
Occasionally, paediatric HCPs consider particular medical intervention s to be inappropriate. Practitioners are not legally obligated to provide such treatments. Medical futility is difficult to define, and careful consultation with appropriate medical, legal and ethical experts may be warranted before declaring a treatment option to be inappropriate .
An HCP may become involved in conflicts related to scarcity of resources. Allocating organs for transplantation or providing intensive life-sustaining therapies during a pandemic are two practical examples. A detailed discussion of the ethics of priority-setting is beyond the scope of this statement, but as a general principle, the first duty of HCPs is to the patient under care.
Decisions around resource allocation are best made in advance, with appropriate representation from those impacted by the decision and following a clearly agreed upon process and framework .
Paediatric HCPs should be advocates for equitable access for paediatric patients to health care resources in such circumstances.
SUMMARY Medical decision-making in paediatrics is complicated by the wide variation in physical and psychological development as patients age. The participation of children and adolescents in health care decision-making should increase in proportion to their developing capacity. The following recommendations support those principles. HCPs and 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. 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 the 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 and to facilitate patient and family access to such assistance as well.
Recommended resources Canadian Medical Protective Association. A consent guide for Canadian physicians: www. Peppin P. Informed consent. Canadian Health Law and Policy, 3rd edn. Markham, Ont. LexisNexis, Berry RM. Informed consent law, ethics, and practice: From infancy to reflective adolescence.
HEC Forum ;17 1 — Osborne PH. Consent to treatment. Toronto, Ont. Thomson Reuters, Bioethics for clinicians: 3.
CMAJ ; 6 — Williams JR. The Cambridge Textbook of Bioethics. Bioethics for clinicians: 9. Involving children in medical decisions. CMAJ ; 6 —8. Moral-psychological development related to the capacity of adolescents and elderly patients to consent.
J Med Ethics ;34 8 —5. Ecoffey C, Dalens B. Informed consent for children. Curr Opin Anaesthesiol ;16 2 —8. Baylis F. Ethics Med Pract ;3 1 :2—3. Informed consent: Ethical implications in clinical practice.
Curr Opin Anaesthesiol ;17 2 — Involving parents in decisions to forego life-sustaining treatment for critically ill infants and children. Zinner SE. The elusive goal of informed consent by adolescents. Theor Med ;16 4 — The competency of children and adolescents to make informed treatment decisions. Child Dev ;53 6 — Lewis CC. How adolescents approach decisions: Changes over grades seven to twelve and policy implications. Child Dev ;— Adolescent decision-making: The development of competence.
J Adolesc ;12 3 — Values was more than one subspecialist involved in the case. The mean age of patients in the study was 2. We found that complex care PCPs had years. That test was performed more often than all age of the parents, insurance status of the child, and other studies combined.
When replicating the analysis excluding the decision-making process regarding fundoplication. Few surgeon who was part of the research team, results retained patients having a fundoplication had the recommended significance with the exception of aspiration risk relative evaluation for GERD, and few had a trial pharmaco- risk 1.
Of the total vari- collaborate to establish shared management plans. Ultimately, the family and the child with the gas- esophageal reflux, as well as those that relate to aspiration. If the the influence of hospitalists and neonatologists was.
A Surgeon-reported influence of specialty providers upon fundoplication decision. B Availability of diagnostic studies to surgeon and their reported influence upon fundoplication decision. PCPs will need to be much more integrated into the patients in which the decision is made during a hospitaliza- decision-making process. Other research on gastrostomy tube insertion from the Our findings regarding the influence that parents have in perspective of the parents offers interesting insights.
In a recent systematic review the decision process, but the involvement of parents is of decision-making surrounding the insertion of a gastro- significantly lower in the inpatient setting.
This may reflect stomy tube, other authors concluded designing and imple- time constraints, the brief face-to-face time characteristic menting a pediatric decision aid for this decision is of the inpatient experience, or differences in the types of warranted.
Adjusted results are adjusted for all variables shown in the table. Adjusted relative risk for derived factors GERD diagnosis, hospitalist or neonatologist involvement, and aspiration risk are presented as a change from the 25th percentile to the 75th percentile. To meet the ideals of nosing GERD has been questioned. Our prospective study confirms be the driving force in the fundoplication decision. Our that certain subspecialists, including neonatologists and questionnaire did not ask how the diagnosis of reflux hospitalists, exert influence on this decision on a case-by- was made, or whether concern about future reflux was case basis.
It is reasonable to conclude from our results that nificant role in the decision to perform fundoplication the pediatric surgeons under study are not the only driver of despite the lack of convincing evidence for this inter- fundoplication rates at the study center. A decision-making vention. Aspiration has been posited as one of the main intervention directed solely at the pediatric surgeons would causes of morbidity and mortality in patients who are neuro- be unlikely to succeed, and better understanding the logically impaired.
An UGI can be for neurologic impairment. Fundoplication and gastro- clinicians are still making judgments about aspiration and stomy versus image-guided gastrojejunal tube for enteral feeding in fundoplication. J Pediatr Surg. Medicare Payment Advisory Commission. Available at: www. Accessed July perspectives and attitudes toward fundoplication that may 24, Shared decision-making This strategy may oversimplify the decision making.
We in pediatrics: a national perspective. An assessment of the did not examine the opinions of parents or those of the shared-decision model in parents of children with acute otitis media. We choose the deci- Pediatrics. Decision aids for people a gastrostomy tube is also complex and sensitive to the facing health treatment or screening decisions.
Cochrane Database opinions of multiple pediatric providers beyond the pedi- Syst Rev. Finally, we did not look at clinical outcomes, The effect of a shared decision- making program on rates of surgery for benign prostatic hyperplasia.
Med Care. The medical home. National trends in the use of antireflux procedures for children. Pediatric deaths attributable to complex chronic conditions: a population-based study of Washing- Consulting and referring subspecialty physicians play ton State, — Zou G. A modified poisson regression approach to prospective studies plication in the patients studied. PCPs are not seen as a major with binary data.
Am J Epidemiol.
Avail- ship with the medical home. Accessed the effect of care that may be driven by subspecialty July 24, Characteristics of the patient-centered outcomes should examine the satisfaction pediatric hospitalist workforce: its roles and work environment. Lye PS. Arch Pediatr Adolesc Med. However, the study design; the collection, Dev Med Child Neurol.
The authors have no conflict of interest to disclose. The