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An 8 month old infant was found to be unresponsive at home by his mother. Despite, initial signs of life the infant was in full asystolic cardio-respiratory arrest on arrival to A&E. There was no past medical history of note and they had been well on the day of presentation. Full resuscitation was carried out, with return of spontaneous circulation at 30 min. The infant was transferred to PICU for ongoing management. Despite multiple investigations, no cause was found for the cardiac-arrest, with brain MRI sadly revealing a severe hypoxic-ischaemic injury. Sedation and ventilation were weaned off, but the infant did not demonstrate independent respiratory effort. Following discussion with both parents, a decision was made to withdraw life-sustaining treatment. The infant was extubated on an infusion of morphine and midazolam, dying soon afterwards.
The PICU trainee felt distress; she intended to alleviate suffering, but did morphine and midazolam hasten the infant’s death?
This vignette has been drawn from authors’ experiences and does not represent a real case.
This case vignette is taken as a representative scenario where the ‘Doctrine of Double Effect’ (DDE) might be used to alleviate the paediatric intensive care unit (PICU) trainee’s distress. In this piece, the authors’ aim to describe the widely known DDE and demonstrate that it is no longer needed to ethically justify good end-of-life practices and the delivery of compassionate and excellent palliative care.
‘Primum non-nocere’—first do no harm is a fundamental principle on which we aim to base practice. Many think this is part of the Hippocratic Oath, but it comes from another work ‘Of the Epidemics’, which Hippocrates may not even have written. It includes the phrase; ‘As to diseases, make a habit of two things—to help, or at least to do no harm’. 1 But how realistic is it to always hold to this principle?
The assumption is that doctors provide care without causing harm. However, daily we cause harm trying to do good—for example, causing pain and bruising during venepuncture or reducing immunity by removing a spleen in sickle cell patients. Such interventions are justified by balancing risks and benefits, but in reality, do not usually result in much ethical deliberation. However, first do not harm is not an absolute principle always prevailing over others, under any circumstances. It may conflict with other relevant medical values and ethical principles, including beneficence, autonomy and justice. For each case, deciding the best course of action requires the careful balancing of involved values and reasoned arguments to ground these decisions. Harms are an accepted feature of medical practice, but we have the duty to avoid actions that carry unnecessary and disproportionate harm to patients.
Traditionally, the ethical argument underpinning the justification of harm carried out in pursuit of a greater good has been attributed to the Italian philosopher Thomas Aquinas, who wrote in his XII century Summa theologiae ‘Nothing hinders one act from having two effects, only one of which is intended, while the other is beside the intention. Accordingly, the act of self-defence may have two effects: one, the saving of one’s life; the other, the slaying of the aggressor’.2 The derived DDE is referenced frequently in medical ethics texts. It states that for an act to be justified, four described conditions must be met;
The act-in-itself cannot be morally wrong or intrinsically evil.
The bad effect cannot cause the good effect.
The agent cannot intend the bad effect.
The bad effect cannot outweigh the good effect; there is a proportionate reason to tolerate the bad effect.
As medicine advances with a reduction in both child morbidity and mortality, an increase in the number of children surviving with chronic and increasingly complex medical conditions has occurred.3 Some of these children sadly die in hospital due to disease progression, often after periods of organ support for acute deterioration accompanied by numerous painful procedures, sedation and paralysis.4 Inevitably, such cases lead to difficult end-of-life decisions regarding whether to limit treatment (DTLT) with the discussions about resuscitation, withdrawal/withholding of life-sustaining therapies, consideration of the DDE with palliative sedation and even euthanasia.
UK law is clear: giving medication to kill a patient is illegal, so euthanasia—the act of deliberately ending a person’s life to relieve suffering—is a criminal act.
In 2015, the Royal College of Paediatrics and Child Health (RCPCH) published the latest version of its framework ‘Making decisions to limit treatment in life-limiting and life-threatening conditions in children’.5 It provides both legal and ethical guidance to help with difficult decisions, ideally made with the child and parents, with an emphasis on situations when withholding or withdrawing life-sustaining treatment may be ethically appropriate. The framework describes three circumstances in which this may be considered: (1) when life is limited in quantity, (2) when life is limited in quality and (3) informed competent refusal of treatment. In these cases, the child’s best interest is the guiding principle, with DTLT intended to benefit the child by preventing further distressing interventions that can no longer help. The child’s death is not the desired consequence of DTLT, though maybe foreseen and even expected, which approaches a DDE-type justification.
However, when the withdrawal of mechanical ventilation is clinically and ethically appropriate, is it acceptable to administer drugs such as muscle relaxants and sedatives to prevent a child’s suffering?
The RCPCH framework clearly states that muscle relaxants should not be commenced immediately before, or following, extubation with that explicit intention—rather expert end-of-life/palliative care should be provided to prevent distress and suffering.5 Applying the DDE to justify the use of muscle relaxants to alleviate terminal gasping fails DDE condition 2, in relieving suffering by directly causing death.
Common end-of-life symptoms such as dyspnoea and pain are routinely managed with opioids and sedative drugs, including palliative sedation. It has been traditionally argued that although such drugs might shorten life, the duty to alleviate suffering means their use can be justified by the DDE.6 Supporters claim the intended effect is pain relief, with death as a foreseen but not intended consequence.
However, surely prescribers must understand both the anticipated benefits and the side effects of the drugs they prescribe, if not how can they assess the risk/benefit ratio to the patient?
Furthermore, evidence increasingly shows that the correct use of opioids/sedatives during end-of-life care prolongs life by relieving pain, facilitating breathing and increasing comfort. It seems to us that the DDE has, therefore, no place in routine palliative care opioid/sedative prescribing.7
The DDE has been cited to justify many controversial practices in palliative care (Shipman, other scandals). Given it has no role in the consideration of medication in end-of life care and is dangerous when used as a fig leave for what we shall kindly call excessive palliative sedation, we argue it should be discarded from the medical lexicon.
The PICU trainee needed no DDE justification for her actions to either herself or for others. She was reassured that her excellent compassionate care and expert end-of-life practice was in the best interests of the child who died peacefully in his mother’s arms.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.