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Huang and colleagues provide some intriguing insights into the attitudes about end of life care of practising Taiwanese neonatal doctors and nurses.1 There are some similarities with surveys from other parts of the world. Most Taiwanese neonatologists and nurses agreed that it was potentially appropriate to withhold or limit treatment for infants who were dying. A very high proportion was opposed to active euthanasia of such infants. But there were also some striking differences. Only 21% of Taiwanese doctors ‘agreed’ with withdrawal of mechanical ventilation for dying newborn infants. This proportion is lower than reported in any European country.2 More than 90% of neonatologists surveyed in the UK, the USA, The Netherlands and Sweden found withdrawal of mechanical ventilation acceptable.2 ,3 Taiwanese doctors also seemed reluctant to give analgesia or sedatives to such infants, with almost 60% disagreeing with their use in dying infants where there was a risk of hastening death.1 In contrast, two-thirds or more of European neonatologists thought this was acceptable (and in several countries this rate was again above 90%).2
The results of the survey of Huang et al highlight three beliefs about end-of-life care that are widespread, but all of which are seriously mistaken1. None are new, but they are persistent and, what is more, they cause significant harm to dying newborn infants, children and adults.
Myth 1: withholding treatment is less morally serious than withdrawing treatment
Neonatologists and nurses in Taiwan were significantly more inclined to withhold life-saving treatment that to withdraw the same treatment. Thus, they appeared to reject the so-called Equivalence Thesis: ‘Other things being equal, it is permissible to withdraw a medical treatment that a patient is receiving if it would have been permissible to withhold the same treatment (not already provided), and vice versa.4 ,5
The Equivalence Thesis has been widely supported by philosophers and ethicists, professional guidelines6 and the courts.7 However, while the results from the Taiwanese survey are somewhat more extreme, only a third to two-thirds of medical professionals in other parts of the world believe that withholding and withdrawing are ethically and legally equivalent.
Why do doctors and nurses continue to hold that withholding and withdrawing treatment are different? One potential contributor includes the willingness of clinicians to consider resource limitation in withholding but not withdrawal decisions. However, in many parts of the world the most likely explanation may be a cognitive bias that distinguishes omissions from actions.8 ,9 There may be some specific features in Taiwan that exacerbate the problem. In another commentary in this issue, Professor Siew Tang highlights the legal ambiguity surrounding withdrawal of mechanical ventilation, and the considerable legal hurdles that discourage such decisions in Taiwan.10
Myth 2: Providing analgesia to dying patients hastens death and should be avoided or limited
Doctors and nurses in Taiwan were reluctant to provide analgesics ‘despite fatal risks’. The researchers and the clinicians surveyed appeared to share a view that providing opiate painkillers or sedatives to dying patients may accelerate their demise and were keen to avoid this. In Western countries, this risk is also a concern for clinicians, but is typically justified by the doctrine of double effect. This has been supported by the courts and by professional guidelines.6 ,11 For example, Lord Goff, in the Tony Bland case, noted that it was established law that a doctor who is caring for a patient dying of cancer may ‘lawfully administer painkilling drugs despite the fact that he knows that an incidental effect…will be to abbreviate the patient's life’.7
Recently, though, a number of palliative care specialists have challenged whether drugs like morphine do actually hasten death when provided as an analgesic, and consequently whether the doctrine of double effect is even relevant for decisions of this sort. In a large number of studies of palliative care patients, sedative or morphine use was not associated with length of survival.12–14 Indeed, there is evidence that, paradoxically, higher doses of opioids and sedatives are associated with longer survival after extubation in the intensive care unit.15 ,16 Withholding analgesics because of a fear of hastening death is therefore doubly problematic.
Myth 3: Major international differences in end-of-life care are inevitable and justified
Finally, the paper by Huang et al1 fits into an established literature about the wide variation in end-of-life care in different parts of the world. A large international survey of almost 2000 adult intensive care physicians found major variation in end-of-life attitudes and in preferences for management, including the use of do-not-resuscitate orders, and terminal withdrawal of mechanical ventilation.17 There are differences between countries in neonatologists’ apparent willingness to resuscitate an extremely premature infant, and in whether they would discontinue life-sustaining treatment in the event of a severe brain injury.18 Paediatric intensive care physicians in different parts of Europe19 and different continents20 have strikingly different attitudes and practices in end-of-life care.
This variation between countries sometimes leads to a conclusion that ethical principles are not universal and are relative to the cultures in which they are applied.20 We might simply observe that Taiwanese care of sick newborn infants is different from that elsewhere and have nothing to say about whether it should be otherwise. However, a strong form of cultural relativism about ethical norms and end-of-life decisions is untenable.21
This does not mean that all variation between countries is without justification.22 Where the values of patients or their families differ between countries, it is appropriate that decision-making reflects this. Differences in the legal environment are clearly going to affect practice (though there is a separate question about whether those laws are justified). But differences in practice that are the result of cognitive bias or mistaken beliefs about the effect of opiates are not acceptable. In a previous publication, the same Taiwanese research team reviewed the medical charts of 61 infants who died in the neonatal intensive care unit. Extraordinarily, only 12% of dying newborn infants were prescribed pain killers in the last week of their lives. In all, 92% of infants had multiple episodes of attempted resuscitation including cardiopulmonary resuscitation.23
These three myths in end-of-life care lead to untreated pain and prolonged dying. It is high time for the myths to be abandoned.
References
Footnotes
Funding This work was supported by an early career fellowship from the Australian National Health and Medical Research Council [1016641].
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.