Introduction: Controlled sedation for refractory suffering can be defined as sedation for intractable distress in the dying.  Of note, there are multiple terms which also have been used to describe this practice (e.g., ‘total,’ ‘continuous deep sedation,’ ‘palliative,’ or ‘terminal’ sedation). Of all these terms, ‘palliative sedation’ is most utilized and recognized by clinicians. However, palliative sedation is a vague and somewhat euphemistic term that requires sub-definitions (proportionate palliative sedation refers to the more usual prescription of short-acting sedatives like lorazepam in response to a symptom like anxiety or delirium; palliative sedation to unconsciousness refers to rapidly induced sedation to unconsciousness in response to a refractory symptom in a dying patient).  Considering the confusion and lack of clarity in the use of the term ‘palliative sedation’, we are going to utilize the term “controlled sedation for refractory suffering” in this Fast Fact which will review the medical decision-making surrounding controlled sedation. Fast Fact #107 reviews administration best practices.

Background on controlled sedation: The use of controlled sedation has been reported to be anywhere from 2-50% of hospice patients.  Pain, anxiety/psychological distress, dyspnea, and delirium/agitation are the most common indications. Controlled sedation is generally accepted among many bioethicists and major medical groups for patients with severe and refractory physical symptoms and a short prognosis (e.g., weeks, or less).

Controversy with its use for existential suffering: While there exist objective criteria for quantifying and treating physical distress, evaluating distress from ’existential suffering’ is more difficult.  There are no simple and clinically oriented tools to evaluate spiritual and psychosocial components of mental suffering.  Many clinicians find the idea of sedation for existential suffering to be ethically more challenging than similar treatment for physical suffering.  In either case, the decision to begin a trial of sedation is always difficult for clinicians, requiring thorough patient assessment and discussions with the patient, family, and other team members.

Ethical/Legal Basis: In the United States, Supreme Court rulings (Vacco v. Quill, 1997 and Washington v. Glucksberg, 1997) supported the concept of sedation when used to relieve intractable suffering in dying patients.  However, controversy still surrounds the use of sedation due to confusion with euthanasia.  From an ethical and legal standpoint, the key difference is intent.  In euthanasia the intent is to produce a hastened death.  In sedation, the intent is to relieve intractable suffering, not hasten death.  Of note, some studies have found minimal to no difference in survival between hospice patients who required sedation for intractable symptom control during their last days and those who did not.

What is a refractory/intractable symptom? Cherney and Portenoy clarified the distinction between a difficult vs. a refractory symptom.  A refractory symptom, one for which total sedation may be appropriate, should have the following three attributes:

• Aggressive efforts short of sedation fail to provide relief.
• Additional invasive/non-invasive treatments are incapable of providing relief.
• Additional therapies are associated with excessive/unacceptable morbidity or are unlikely to provide relief with a reasonable time frame.

Patient selection considerations: Several patient selection guidelines for controlled sedation for refractory suffering have been published. The guidelines below would be appropriate for physical symptoms and/or existential symptoms.

• The patient must have a terminal illness.
• All reasonable palliative treatments have been exhausted.
• Psychological assessment by a skilled clinician.
• Spiritual assessment by a skilled clinician or clergy.
• Reasonable treatment limitations like a do-not-resuscitate, do not intubate are in place.
• An informed discussion has occurred with either the patient or their surrogate medical decision-maker and this has been documented in the medical records.
• Nutrition/hydration issues need to be addressed prior to sedation.

Respite sedation: One additional consideration proposed by Rousseau and others is the concept of Respite Sedation – a time limited trial (usually 24-48 hours) to break a cycle of suffering, especially if the source of suffering may be short-lived (e.g., refractory constipation that may resolve after sedation which allowed the rapid tapering of opioids).

References

1. Cherny NI. The use of sedation in the management of refractory pain. Principles and practice of supportive oncology Updates. 2000; 3:1-11.
2. Maltoni M, Scarpi E, et al. Palliative sedation in end-of-life care and survival: a systematic review. Journal of clinical oncology 2012; 30: 1378-1383.
3. Cherny NI, Portenoy RK. Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. J Pal. Care. 1994; 10::31-38.
4. Cherny, NI. Commentary: sedation in response to refractory existential distress: walking the fine line, J Pain Symptom Manage. 1998; 16(6):404-5.
5. Charter S, et al. Sedation for intractable distress in the dying-a survey of experts. Pall Med. 1998; 12:255-269.
6. Braun TC, et al. Development of a clinical practice guideline for palliative sedation. J Pall Med. 2003; 6:345-350.
7. Hallenbeck J. Terminal sedation for intractable distress. West J Med. 1999; 171(4):222-3.
8. Muller-Busch H, et al. Sedation in palliative care – a critical analysis of 7 years experience. BMC Palliative Care. 2003; 2(1):2.
9. Rousseau P. Existential suffering and palliative sedation: a brief commentary with a proposal for clinical guidelines. Am J Hosp Palliat Care. 2001; 18(3):151-3.
10. Maiser S, Estrada-Stephen K, Sahr N, Gully J, Marks S. A survey of hospice and palliative care clinicians’ experiences and attitudes regarding the use of palliative sedation. Journal of Palliative Medicine. 2017 Sep 1;20(9):915-21.

Version History:  originally published in February 2004. 2^nd version in April 2009; 3^rd version edited by Sean Marks MD in June 2015; 4^th edition edited by Sean Marks MD in January 2024.
Conflicts of Interest: None to report.