This article appears in the February 2002 edition of the Catholic Medical Quarterly
This paper highlights the dangers of terminal sedation - a controversial aspect of palliative care. The author drew attention to the dangers of sedation without hydration some years ago (Journal of Medical Ethics 1994; 20:139-143) and debated the issues at the Royal College of Physicians in 1997 (Ethics & Medicine 1 999;15.l:15-19).
The author shows how advocates of euthanasia in the UK and elsewhere are exploiting the practice of "terminal sedation" and considers their allegations. The ethical and legal risks of sedation would be greatly reduced if palliative carers took a more active approach to hydration.
Sedation when given with the sole intention of relieving suffering at the end of life has become an accepted but highly controversial aspect of palliative care. Some years ago I warned that the practice of sedation without hydration would strengthen the hand of those who sought to promote euthanasia. My warning proved true! Advocates of euthanasia on both sides of the Atlantic are now trying to exploit the practice of 'terminal sedation� or 'slow euthanasia� for their own ends. Take for example an article by Irwin in the Voluntary Euthanasia News of May 2001(1)
Dr Michael Irwin is a prominent member of the Voluntary Euthanasia Society in the UK and acts as their main spokesman. He attended the biennial conference of the World Federation of Right-To-Die Societies that was held in the USA in September 2000. According to Irwin, 70 participating doctors signed the 'Boston Declaration on Assisted Dying� the main paragraph of which states:
"We wish to draw public attention to the practice of 'terminal sedation� or 'slow euthanasia� which is performed extensively today throughout the world in hospitals, nursing homes, hospices and in private homes...., a physician may lawfully administer in creasing dosages of regular analgesic and sedative drugs that can hasten someone�s death as long as the declared intention is to ease pain and suffering...... Compassionate physicians, without publicly declaring the true intention of their actions, often speed up the dying process in this way. Many thousands of terminally-ill patients are so helped globally every year."(1)
Reporting back to members in the UK Irwin wrote:- "For VES members, I believe it is important that we stress that terminal sedation, both voluntary and involuntary...... is widely performed in this country, especially in hospices and nursing homes, and as it is totally uncontrolled, this procedure is open to abuse."(1)
The allegations in the Boston declaration are serious, but difficult to substantiate. When a patient is dying it is hard to prove beyond all reasonable doubt that life was shortened by the treatment given. Nevertheless concerns about "slow euthanasia" - a term used by Rulings and Block in 1996 (2) - have focused minds and stimulated research considerably in recent years. However as the Tumim Committee observed in their position statement in March 2001 "While there is a widespread belief that voluntary euthanasia occurs in the UK, its prevalence is a matter for conjecture. The procedure�s illegality makes reliable information impossible to obtain."(3)
In recent years, serious attempts have been made to gather hard information about the use of sedation in terminally ill patients. However very few people have attempted to study the relationship between sedation and dehydration. In a highly controversial paper written in 1997, Quill and colleagues considered "palliative options of last resort" and compared voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide and voluntary active euthanasia. They argued that "Terminal sedation and voluntarily stopping eating and drinking would allow clinicians to remain responsive to a wide range of patient suffering, but they are ethically and clinically more complex, and closer to physician-assisted suicide and voluntary active euthanasia than is ordinarily acknowledged." Various safeguards were proposed for any medical action that may hasten death.(4) Their paper provoked much critical comment from people who considered the proposals immoral and unethical.(5)
Published estimates of the number of patients requiring sedation for intractable symptoms at the end of life vary widely. Initial reports by Ventafridda gave a high incidence of sedation in the region of 52%.(6) Fainsinger and colleagues in a multicentre international study found that the "intent to sedate" in hospices in Israel, Durban, Cape Town and Madrid varied from 15% to 36%, sedation being defined as when the patient was made unresponsive in order to achieve comfort. Sedation with midazolam was used in most cases. Wide cultural variations were found, particularly with respect to sedation for delirium: the use of sedation for this symptom varying from 15% in Durban to 60% in Madrid. The use of sedation for other symptoms showed less marked variations between centres. In general, about 80% of the patients studied needed medical management for pain, 40% for nausea and vomiting, and 25 to 53% for shortness of breath. The authors commented, "We need to be mindful of the suggestion that, with careful assessment of reversible factors and alternative management for problems like delirium, some of the need for sedation may be avoided."(7)
Within nations individual physicians are likely to have different thresholds for intervention. Treatment may also be influenced by factors such as the stoicism and wishes of the patient. Some patients, for example, if given a choice, may prefer to avoid sedation, whereas others who fear impending disability and death may request sedation at a relatively early stage in their illness. As Irwin notes "The very wide variations in the frequency of sedation among different medical centres suggest that the choice to sedate patients may reflect doctor�s behaviour or the organisation�s policies rather than the patients preferences or needs."(1) l am reminded of Main�s observation about the risk of inappropriate sedation! However very often some degree of sedation, chosen with skill and sensitivity, is essential for the patient s comfort.
Thorns and Sykes, reporting a retrospective study of the use of opioids in the last week of life in 238 consecutive hospice patients, concluded that "appropriate use of opioids does not shorten life, and there is little if any need to invoke DDE." (DDE is short for doctrine of double effect.) 28 of their patients had a marked increase in opioids in the last week of life, mainly for pain, shortness of breath or cough, and all were on some unspecified sedation. No comment was made about the use or otherwise of hydration. The authors found no significant difference in survival between patients who had a marked increase in opioids in the last week of life, and those who did not. They comment "The DDE may be a useful principle that can offer reassurance to health-care professionals facing difficult treatment decisions, but it must be distinguished from euthanasia and its role should not be exaggerated."(8)
Published reports tend to confirm the view that sedation is widely used at the end of life, but the link between sedation and death has not been established. Delegates at the Right-to-Die Conference in Boston were undaunted by such difficulties. Perhaps they had access to inside information about their own activities. Perhaps it suited their purposes to exaggerate the situation. On the other hand, perhaps they were indeed telling the truth, for there is no smoke without fire! What is needed now is some good research to determine whether sedated patients who are hydrated survive longer than sedated patients who are left without hydration. Common sense suggests that they will.
Irwin argues that the practice of terminal sedation amounts to euthanasia "because the comatose patient often dies from the combination of two intentional acts by a doctor - the induction of unconsciousness, and the withholding of food and water. And so, for many, terminal sedation is really Society�s wink to euthanasia, for on the surface it looks like a combination of the accepted practices of aggressive comfort care and the withdrawal of life-sustaining treatment." Irwin sees the practice of terminal sedation "as a form of psychological defence mechanism for palliative care practitioners, allowing them to focus on keeping a terminally ill patient in a pharmacological oblivion rather than acknowledge that they may be actively ending someone�s life."(1)
At the Right-to-Die meeting in Boston, several American physicians were reported to be "concerned that the palliative care movement, especially in the United States, was generally encouraging terminal sedation as a 'good medical practice� which could eventually be seen as a better alternative to physician-assisted suicide or voluntary euthanasia." Irwin concedes that by "creating the illusion of a natural death and avoiding the sense of urgency, for some terminally ill patients and their families, slow euthanasia may be more acceptable than rapid and fully acknowledged euthanasia." This worries advocates of the lethal injection approach who are campaigning for the right to die by "rapidly effective lethal drugs". However they hope to sway public opinion in this direction by various ploys. They will no doubt emphasise the disadvantages of "slow euthanasia", referring to this as a lingering death, with loss of dignity, and distortion of the memory left in the minds of loved ones, in the hope that the public will clamour for a quick exit.(1) These points may be valid in some cases, but in general the public should be wary of propaganda and the use of emotive language. A lingering death for example, may also be a peaceful death that allows loved ones time to accept the inevitable. A calm but sedated person, lovingly cared for, need not lack dignity. Take away the propaganda factor and many of the points raised by advocates of euthanasia carry little weight.
I do however, share the view that prolonged sedation without hydration is, on occasions, tantamount to euthanasia. I also feel that the hospice movement has not fully grasped the nettle of dehydration, nor fully addressed the implications of their reluctance to maintain hydration at the end of life. I hope that the forceful views of the Right-To-Die movement will encourage palliative carers to take a more active approach to hydration. In my view, the legal and ethical problems of terminal sedation could be overcome quite simply by providing hydration for a matter of days until life ends naturally. The provision of life supportive fluids is surely preferable to death by lethal injection.
No one should underestimate the difficulties that palliative care workers face. Their main aim is to ensure that dying patients do not suffer. Most workers in the speciality are, to quote a leading article in the Lancet, "ardently opposed to any form of euthanasia."(9) However it must also be recognised that some people working in the field see things rather differently. Take for example the aforementioned article by Quill(4) or a disturbing review by Billings who advocates the practice of sedation without hydration for the relief of intractable suffering in the dying patient.(10)
Current legislation protects doctors whose intentions are honourable. Intentional killing by a deliberate act remains unlawful in the UK and in most other countries at present. However doctors remain extremely sensitive to close scrutiny of their actions at the end of life and are wary of any legislation that might limit their clinical freedom.(11) Doctors whose primary aim is to control pain and distress are well protected by current legislation. Nevertheless concerns expressed by sections of the medical profession in recent years have helped to block broader anti-euthanasia legislation in the UK and in the USA. I refer to the Medical Treatment (Prevention of Euthanasia) Bill in the UK and the Pain Relief Promotion Act in the USA. One can only hope that new legislation will be devised that will prevent euthanasia by act or omission, while enabling doctors with honourable intentions to control pain and other distressing symptoms at the end of life.
According to Hardy there is now concern "that sedation as the best means of symptom control in the dying patient may be underused because of the fear of employing 'terminal sedation�"(9) - in other words because of concerns about euthanasia. Rather similar concerns are raised from time to time about the use of opioids, for it is alleged that fear of prosecution may prevent doctors from prescribing adequate doses for pain relief. However in skilled hands opioids do not shorten life. Equally in skilled hands, and with careful attention to hydration, sedation need not, and should not, shorten life.
Dr. Gillian Craig FRCP is a retired consultant geriatrician in Northampton.
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