primary teams do not appear as actively involved after goals of care transition away from curative therapies.107,108 Palliative care teams are best used as complementary to, but not in place of primary cardiac team care and interventions.13 Early, consistent and longitudinal involvement of palliative care is essential to providing effective support to the patient and family, as well as the medical team, during the disease progression, in meeting goals for care, and beyond the end of a patient's life (Fig 83.1).13,103,109–111 In addition, pediatric palliative care teams can assist with transition to adult providers and continue involvement through progression to death and bereavement care.75,83,109,112,113 FIG 83.1 Spectrum of pediatric palliative care: concurrent and complementary components of care (Modified from Feudtner C Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making Pediatr Clin North Am 2007;54[5]:583–607.) Permissibility of Withdrawal or Discontinuation of Devices The discontinuation of pacemakers, ventricular assist devices (VADs), and ECMO for purposes of WLST is ethically and legally permissible in North America, Europe, Australia, and elsewhere.59,93,114–119 These devices, as with any other technologic or medical support, can be refused or discontinued in the same manner as endotracheal tubes, dialysis, chemotherapy, or medications Legally, there is broad prerogative given for patients to decide the amount and degree of suffering, invasiveness, therapy, and indignities they choose to accept since the US Supreme Court decision allowing the discontinuation of mechanical ventilation occurred in 1976 It has since extended to decisions for withdrawal or withholding therapies including fluids and nutrition and to decisions based on previously expressed wishes, substituted decision, and best interests.93,118,120–123 Ethical Justifications Withdrawal or withholding of life-sustaining therapies is ethically justifiable for several reasons It can be defended by both deontologic (duty based—the sanctity of life is important but not absolute, so there is no duty to give lifesustaining therapy where there is no benefit) and consequentialist (best consequences in an overall burdens and benefit analysis) moral theories.124 In addition, it can be defended by balancing the four ethical principles (see Table 83.2).59,125,126 Overarching all of these, is the concept that treatments should be in the child's best interests (see Table 83.3) (See also “Shared Decision-Making” and “Decisional Authority” sections.) Understanding the autonomy principle here is important It grants respect to the person to choose what happens to his or her body Any person with capacity can decide to forgo or stop any technology or therapy even if it is highly efficacious or life-saving.59,88,93,116–119,121–124,127–130 This requires the medical team to review values and reasons for such a request and ensure that appropriate decision-making capacity and legal decisional authority are present prior to enacting a discontinuation of life-sustaining therapies (see Table 83.3) The substituted judgment expressed by a surrogate also respects the person in that this choice is the one the patient would have made if he or she were able to have capacity in that moment The advanced directive legally represents the expressed prior wishes of the autonomous patient, or a medical proxy can be granted by the patient to have this individual make decisions on his or her behalf (see Table 83.3).122,123 More often in pediatrics, where the patient will not have the capacity to make such a decision due to age, maturity, or illness, the WLST is based on a best interest judgement.88,93,102,129–132 Here the concern is for ongoing harm without benefit It may be appropriate to stop a therapy in the patients’ best interests when the potential for any benefit is exceedingly low and the potential for accruing ongoing cumulative morbidities and suffering is high.116,122,130–132 As stated before, best interests considerations have a degree of subjectivity that may entail not only medical efficacy, but judgments of QOL and suffering that may vary between individuals, cultures, and belief systems (see Table 83.3) Ethical justifications for discontinuation of pacemakers, VAD, and ECMO are not different than those for other devices such as ventilators or dialysis machines The proximity of death does not dictate ethical permissibility.123,127,129–131 If allowing death to happen is ethically justifiable, how quickly death occurs is incidental Hence whether death is proximate to the discontinuation of a VAD or to discontinuation of a ventilator, the justification for this discontinuation remains ethically permissible by the same theories and principles Further concerns have been raised in considering WLST to be causative of death The ethical distinction between euthanasia and WLST is largely drawn on grounds of intent versus action, where allowing to die is accepted but deliberately ending life is not Life support is not withheld to end the patient's life but rather to respect a decision that any given intervention is too burdensome and should be avoided to minimize suffering and maximize dignity Death is a foreseen but unintended consequence.122,123,127,131,133 Similar to discontinuation of any other device, discontinuing circulatory support allows the primary problem, that of a failed circulation, to recrudesce, and no new pathology is introduced in this action.93,117–119,122,123,127,129,130,132,133 Hence the discontinuation of circulatory support is upheld by this ethical justification However, it is important to understand that there is a range of legal mandates about how medical professionals are allowed to be involved in supporting the dying process for patients with terminal conditions in different countries around the world The laws range from allowance for withholding but not withdrawing in some jurisdictions, to allowance for providing prescriptions for patient self- ... patient to have this individual make decisions on his or her behalf (see Table 83.3).122,123 More often in pediatrics, where the patient will not have the capacity to make such a decision due to age, maturity, or illness, the WLST is based on a best