Expanded terminal sedation in end-of-life care (Gilbertson et al. doi:10.1136/jme-2022-108511)

As a retired palliative care physician, I am puzzled by several aspects of this article. First, authors’ choice of terminology: ‘terminal sedation’ and ‘expanded terminal sedation’. It is more than 20 years since the use of the former began to be discouraged because of perceived ambiguity, and replaced by ‘palliative sedation’ (PS)[1] – as reflected in current professional guidelines.[2] And despite dissenting voices,[3] most clinicians would probably consider ‘expanded terminal sedation’ to be ‘slow euthanasia’.
PS was used to describe a deliberate switch from escalation of symptom management to a deliberate reduction in a patient’s level of consciousness in order to ease otherwise intolerable refractory suffering in ‘imminently dying’ patients. The sedation varied from light to deep depending on individual need. Some guidelines refer to ‘intermittent’ as well as ‘continuous’ sedation. Recently, because of the lack of clarity in many reports, there’s been a trend towards limiting discussion to ‘deep continuous sedation until death’ (CDSUD) – the most contentious aspect of sedation near the end of life.
Second, it may be correct that ‘the Doctrine of Double Effect (DDE) continues to shape much of the ethical and legal literature concerning end-of-life care’ (EOLC), but what about the medical literature? Would it surprise the authors if I say that, when a practicing clinician, I never agonized about ‘double effect’? As they noted, DDE was originally formulated to exonerate someone who, when acting in self-defence, injured an assailant. The principle is universally applicable, not limited to medicine or EOLC. The practice of medicine would be impossible without it: all treatment has an inherent risk and, inevitably, sometimes things will go wrong and result in unintentional harm to a patient. However, to say that DDE can ‘justify’ a specific treatment is incorrect. Treatment is justified by necessity (not by DDE) and, accordingly, should always be proportionate to need – but this does mean it must always be ‘gradual’ and never ‘rapid’.
Doctors are committed to sustaining life when feasible and always seeking to relieve suffering. We cannot stand by and do nothing. Even so, we must work within the broad medical principles of ‘do good; avoid or minimize harm’ (beneficence and non-maleficence) [4]. Thus, I strongly agree with the authors when they say that the relief of suffering is a fundamental goal of EOLC. However, I disagree that some dying patients continue to suffer ‘despite the technical knowledge and ability to pharmacologically relieve suffering’ (my italics). The relief of suffering demands an holistic approach by health carers – embracing the physical, psychological, existential and social dimensions of personhood. Particularly in relation to existential suffering, skilled personalized psychological support is essential [5]. Drugs play only an ancillary role.
Indeed, the fictitious case history suggests that the authors – none of whom is a palliative care specialist – are unaware of the full range of possibilities available to clinicians when caring for a patient with severe unrelenting existential distress. Palliative care doctors generally are reluctant to offer CDSUD for existential suffering alone because (a) it is impossible to be sure that the suffering is refractory (generally it is responsive to holistic treatment [5]), and (b) the estimated prognosis tends to be months rather than days.
However, such patients may well benefit from respite sedation. Thus, for a young woman with end-stage cancer who was finding life intolerable (very similar to the case history in the article), I suggested that, because of her much reduced physical stamina and the stress of her illness, being awake for 16 hours a day was too long to cope with, and recommended that she had an extra dose of ‘night sedation’ immediately after lunch (in her case given as an injection of midazolam). This enabled her to sleep for 3-4 hours and wake refreshed, and able to enjoy her visitors in the evening. However, it was not just the pharmacological intervention which eased her distress: I listened to her and acknowledged her distress, and together with individually tailored psychological support, life was no longer intolerable.
Other centres have used time-limited deep sedation for up to 48 hours (often called ‘intermittent PS’) to provide a prolonged period of sleep and relaxation.[6] Such treatment is not conditional on being ‘imminently dying’ but on need. It is best considered as an optional component of standard symptom management for existential distress.
According to the authors, another reason for failing to relieve suffering at the end of life is that a dying patient may be ineligible for CDSUD because their estimated prognosis was several months. As noted above, it was originally suggested that it should be limited to the ‘imminently dying’. Giving the inevitable uncertainties of clinical practice, this was a necessarily vague term. However, with the introduction of more detailed professional guidelines, the limit was variously set at a few hours to a few days, to 1–2 weeks,[2] and sometimes unspecified (just terminally ill with a limited prognosis in Norway). In the Netherlands, when the Royal Dutch Medical Association produced guidelines with a prognostic limit of two weeks, these were ratified by the Department of Health and became a de facto legal time limit, thereby rigidly restricting clinical practice.
Over the last century, as the ability to cure has increased, medical training has become increasingly ‘biomedical’ (cure-oriented) and less ‘holistic’ (comfort-oriented). The modern standard medical paradigm – evaluate, diagnose, fix – has its limitations. Some problems cannot be fixed. This can lead to feelings of failure and an inclination to withdraw, and death may be seen as the only way to deal with the suffering. Thus, doctors who cannot, when appropriate, switch from a cure to a comfort modus operandi will tend to have an unconscious bias towards CDSUD. Certainly, many (possibly most) doctors find caring for dying patients extremely difficult [7]. As a psychiatrist observed many years ago:
‘Patients tend to be sedated when the carers have reached the limit of their resources and are no longer able to stand the patient’s problems without anxiety, impatience, guilt, anger or despair. Perhaps many of the desperate treatments in medicine can be justified by expediency, but history has the awkward habit of judging some as fashions, more helpful to the therapist than to the patient [8].

Further, there seems to be an increasing tendency for CDSUD to be regarded as a ‘one size fits all’ solution for seemingly intractable distress. In stark contrast is the testimony of one palliative care doctor:
‘Throughout a 40 year career in palliative care, I have never ordered ‘palliative sedation’… The very concept fails to capture my clinical reasoning. I do not manage delirium, shortness of breath and pain with standard treatments and then designate a symptom ‘intractable’, turning to ‘last resort’ therapy for severe cases. I do not shift my clinical goal from symptom relief to ‘sedation’, nor do I pre-determine that unconsciousness is the only means by which symptoms can be relieved [9].’
I can echo these words, as can many other holistic palliative care doctors. Inevitably, some patients become sedated as a secondary effect from the escalation of specific symptom control measures, no doubt deeply at times. However, a deliberate abrupt switch from symptom management to CDSUD is extremely rare in my experience, and almost always relates to uncontrollable hyperactive delirium in someone close to death, not to existential suffering.

In conclusion, I would suggest that there is an urgent need to investigate why, in national studies of all non-sudden deaths at home and in care homes and hospitals, the incidence of CDSUD ranges up to 25%, i.e. 10 or more times higher than that reported by several palliative care services [10]. The results should enable more focused training about EOLC, and lead to a considerable reduction in unrelieved suffering at the end of life.
Robert Twycross, MA, DM, FRCP, FRCR
Emeritus Clinical Reader in Palliative Medicine, University of Oxford
Oxford, UK
Email: [email protected]

References
1. Broeckaert B, Nunez Olarte JM. Sedation in palliative care: facts and concepts. In: ten Have H, Clarke D, eds. The Ethics of Palliative Care. European Perspectives. Buckingham, UK: Open University Press 2002.166-180.
2. Gurschick L, Mayer DK, Hanson LC. Palliative sedation: an analysis of international guidelines and position statements. Am J Hosp Palliat Care 2015;32:660-71.
3. Cellarius V. ’Early terminal sedation’ is a distinct entity. Bioethics 2011;25(1):46–54.
4. Beauchamp T, Childress J. Principles of Biomedical Ethics (7th edition). New York:: Oxford University Press 2013.
5. Canadian Association of Psychosocial Oncology. Position Statement: Role of Psychosocial Oncology in Medical Assistance in Dying (MAID). Toronto:: CAPO 2017.
6. Morita T. Palliative sedation to relieve psycho-existential suffering of terminally ill cancer patients. J Pain Symptom Manag 2004;28:445–50.
7. Hicks MHR. Physician-assisted suicide: a review of the literature concerning practical and clinical implications for doctors. BMC Fam Pract 2006;7:39. doi:10.1186/1471-2296-7-39
8. Main T. The ailment. Brit J Med Psychol 1957;30:129-45.
9. Scott JF. The case against clinical guidelines for palliative sedation. In: Taboada P, ed. Sedation at the end-of-life: an interdisciplinary approach. Heidelberg:: Springer 2015. 143-59.
10. Vivat B, Twycross R. CSD Continuous Sedation until death; a response to changing practices in the use of continuous sedation at the end of life: a systematic review of the literature (Heijltjes et al., 2020.) J Pain Symptom Manag 63;1:e139-42.