Nigel Sykes MA FRCP FRCGP (biography and disclosures)
Frequently Asked Questions
The use of sedation in end of life care has become a contentious issue because of concerns that, at the least, it may block the patient’s final opportunity to communicate either with his family or his God, and at worst may shorten life and be tantamount to covert euthanasia (1). In some settings there is evidence that this can indeed be the intention (2).
Why should sedatives be used as a palliative measure in terminally ill people? They are a last resort when a symptom is intractable, i.e. it cannot be controlled by any other means available. Note, that this means that intractability is contextual: it depends on the therapeutic resources that can be accessed and the physician’s capability to use them. Fewer symptoms require sedation if the doctor knows what he is doing and is prepared to try all the treatments first (3).
Data
Reports of the proportion of patients who require the use of sedatives in the closing days of life vary enormously, from 1% (4) to 88% (5). In large part this appears to reflect differences in definition of the use of the word ‘sedation’, with some groups identifying only ‘continuous deep sedation’ which is intended to induce unconsciousness and maintain that state for the rest of the patient’s life, while others note every instance of the use of a sedative drug.
There is no doubt that a sedative dose high enough to cause respiratory depression can precipitate death. Six studies have examined survival times of patients given sedation in specialist palliative care settings. In five of them survival was the same or longer in those receiving sedatives as in those who had no sedatives (6). However, on average the actual duration of sedative use in palliative care is short. A review by Porta Sales of studies involving a total of over 1,700 patients found the mean duration of sedation to be 2.5 days (range 1.3-3.9 days) (7). In combination with the evidence of a lack of shortening of survival under a palliative care service through the use of sedatives, this suggests that sedation is generally a response to symptoms associated with the onset of dying.
Contrary, perhaps, to popular assumption, sedation is not often needed for intractable pain. By far the most common reason for its use in palliative care is agitated delirium, a situation that arises commonly at the end of life when no remediable cause can usually be found. The second most common indication is distress from severe breathlessness (8).
Worldwide, midazolam by subcutaneous injection or continuous infusion is the most often used drug for palliative sedation. Individual doses vary widely according to need, but the largest study has reported a median of 23mg/24h (9). Different benzodiazepines, phenothiazine and other sedating antipsychotic drugs and, occasionally, phenobarbitone are also used, but opioids are inefficient sedatives and are inappropriate for this indication.
Practice tip
The keys to an ethically defensible use of sedation in palliative care are, firstly, careful assessment to determine whether the causes of the distressing symptoms can be reversed and, secondly, the use of sedative doses that are proportional to the severity of the distress. This issue of proportionality has been widely emphasised in recent literature and guidance in this area from Canada and elsewhere (10). The use of sedative drugs is analogous to the use of opioids for pain: a low initial dose is titrated higher against the response until distress is relieved. It is worth recalling that the root of the word ‘sedation’ is not the Latin for ‘sleep’ but for ‘soothing’. The primary intention should not be to achieve a certain level of reduced consciousness but to soothe the distress that is being felt and that cannot be eased any other way. It is not often that induction of coma is necessary for palliation, but a tired, ill patient may well fall asleep if they are at last made comfortable. Even without sedation, only 70% of terminally ill people are spontaneously awake a week before death, a proportion that falls to less than 25% by the last 72 hours of life (11).
Wherever possible, decisions about sedation should not be taken alone but arise out of multiprofessional discussion that should also involve the patient and family where this is practicable (12). It needs to be clearly documented that alternatives to sedation have been considered and that all available expertise has been brought to bear, particularly if sedation is being considered for psychological distress in a patient who is not imminently dying. In this situation an anxiolytic may be regarded as a specific treatment when set within a wider therapeutic approach, but any extended period of sedation needs very careful justification (13).
The provision of clinically assisted hydration or nutrition is a separate decision from that of sedation. The proportionate use of sedatives does not necessarily stop patients eating or drinking, but many patients in whom it is necessary are already taking little if anything by mouth as a result of their progressive illness and there is no clinical benefit in providing them with an infusion or feeding tube. However, the fact that sedation is being used should not in itself be taken as justification for stopping or withholding such interventions.
Sedatives are an intrinsic part of the armamentarium of palliation at the end of life, but they must be used in a considered way, taking alternative treatments into account, choosing an appropriate drug and adjusting the dose carefully to achieve comfort with the least necessary alteration of conscious level. Employing this approach, sedation allows a merciful easing of distress, it is a myth that it routinely shortens life and so it is not a euphemism for euthanasia.
References (Note: Article requests might require a login ID with CPSBC or UBC):
- Billings, JA., Block, SD. (1996) Slow euthanasia. J Palliat Care, 1996; 12(4):21-30. (View Article with UBC)
- Rietens JA, van der Heide A, Vrakking AM, Onwuteaka-Philipsen BD, van der Maas PJ, van der Wal G. Physician reports of Terminal Sedation without Hydration or Nutrition for Patients nearing death in the Netherlands. Ann Int Med, 2004; 141: 178-185. (View Article with UBC or CPSBC)
- Morita, T., Akechi, T., Sugawara, Y., Chihara, S. and Uchitomi, Y. Practices and attitudes of Japanese oncologists and palliative care physicians concerning terminal sedation: a nationwide survey. J Clin Oncol, 2002; 20(3):758-64. (View Article)
- Fainsinger, RL. Use of sedation by a hospital palliative care support team. J Palliat Care, 1998; 14(1):51-4. (View Article with UBC or CPSBC)
- Turner, K., Chye, R., Aggarwal, G., Philip, J., Skeels, A. and Lickiss, JN. Dignity in dying: a preliminary study of patients in the last three days of life. J Palliat Care, 1996; 12:7-13. (View Article with UBC )
- Sykes NP. Clinical Aspects of Palliative Sedation. In: Sterckx S, Raus K, Mortier F. Sedation at the End of Life. Cambridge: Cambridge University Press (in press).
- Porta Sales, J. Sedation and terminal care. Eur J Palliat Care; 2001 ; 8: 97-100.
- Fainsinger, RL., Waller, A., Bercovici, M., Bengston, K., Landman, W., Hoskings, M., Nunez-Olarte, JM. and deMoissac, D. A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliat Med, 2000; 14(4):257-65. (View Article with UBC or CPSBC)
- Sykes, N, Thorns, A. Sedative use in the last week of life and the implications for end-of-life decision making. Arch Intern Med, 2003; 163(3):341-4. (View Article)
- Dean, MM., Cellarius, V., Henry, B., Oneschuk, D. and Librach, SL. Framework for Continuous Palliative Sedation Therapy in Canada. J Palliat Med, 2012; 15:870-9. (View Article with UBC)
- Kohara, H., Ueoka, H., Takeyama, H., Murakami, T. and Morita, T. Sedation for terminally ill patients with cancer with uncontrollable physical distress. J Palliat Med; 2005: 8:20-25. (View Article with UBC or CPSBC)
- Nambisan V, Providing evidence of intention when giving palliative sedation. Eur J Palliat Care, 2012; 19: 93-96. (View Article with UBC)
- Cherny NI, Radbruch L. (Board of the European Association for Palliative Care). European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med, 2009; 23(7):581-93. (View Article with UBC or CPSBC)
Very good article, esp separating sedation from induction of unconsciousness.
Thank you for the article
Good article
A real challenge in Pallative Care with those patients who want a few hours of restful sleep BUT when awake want to be aware of life around them.
I find this a little confusing. If in 5 of 6 studies, the use of sedatives is associated with a similar or longer survival, then how can it be that ” There is no doubt that sedative doses high enough to cause respiratory depression can precipitate death.” Surely you have presented conclusive evidence to the contrary?
Thanks for this article. Confirms the challenges in managing end of life.
Good topic – need more on palliative care.
Well balanced interesting article
I would have liked to get information on the family/caregiver perception of patient’s comfort and overall satisfaction with palliative care when a patient gets sedated vs not.
I have depended more on opioids than sedatives at end of life but certainly, combining them with sedative drugs can be helpful. The Doctrine of Double Effect is a new concept to me, but certainly something to think about. Most of my work now is in a diagnostic and treatment centre, so I do not deal with these issues as much as I did in the past.
Reading the articles has given me a better understanding of the use of sedatives at end of life and it is good to know that, in reasonable doses they do not speed death.
The Doctrine of Double Effect seems to me to be very close to euthanasia, which is not an accepted medical practice. I guess it is a balance between controlling agitation, delirium and restlessness and the slight risk that the sedation might speed death. The articles seem to suggest that they do not speed death.
Great approach, reminds us to treat reversible causes when we can but can be used as an option in appropriate situations and in consultation with team/family/patient.
We have come a long way in palliative care in the last 40 years,but there is still a ways to go. Doctors need better information as in this article and we need better ways to inform families/caregivers to get them onside.
This confirms practice already in use.
Good article.