Introduction Controlled Sedation for Refractory Suffering (also known as ‘total,’ ‘palliative,’ or ‘terminal’ sedation) can be defined as sedation for intractable distress in the dying. The use of sedation has been reported to be anywhere from 2-50% of hospice patients. Muller-Busch reported the indications for sedation included: anxiety/psychological distress (40%), dyspnea (35%) and delirium/agitation (14%). This Fast Fact reviews the medical decision-making surrounding these practices; Fast Fact #107 reviews techniques.
Existential Suffering While there exist objective criteria for quantifying and treating physical distress, evaluating psychological distress (e.g. ’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. 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 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.
Guidelines Several similar sedation guidelines have been published; listed below are Rousseau’s guidelines for sedation in patients with existential suffering. These guidelines would also be appropriate for decisions concerning physical symptoms.
- The patient must have a terminal illness.
- All palliative treatments must be exhausted, including treatment for depression, delirium, anxiety, etc.
- Psychological assessment by a skilled clinician.
- Spiritual assessment by a skilled clinician or clergy.
- A do-not-resuscitate order must be in effect and informed consent obtained and documented.
- 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) in an attempt to break a cycle of psychological suffering.
- Cherny NI. The use of sedation in the management of refractory pain. Principles and practice of supportive oncology Updates. 2000; 3:1-11.
- 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.
- Cherny NI, Portenoy RK. Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. J Pal. Care. 1994; 10::31-38.
- Cherny, NI. Commentary: sedation in response to refractory existential distress: walking the fine line, J Pain Symptom Manage. 1998; 16(6):404-5.
- Charter S, et al. Sedation for intractable distress in the dying-a survey of experts. Pall Med. 1998; 12:255-269.
- Braun TC, et al. Development of a clinical practice guideline for palliative sedation. J Pall Med. 2003; 6:345-350.
- Hallenbeck J. Terminal sedation for intractable distress. West J Med. 1999; 171(4):222-3.
- Muller-Busch H, et al. Sedation in palliative care – a critical analysis of 7 years experience. BMC Palliative Care. 2003; 2(1):2.
- 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.
Version History: This Fast Fact was originally edited by David E Weissman MD and published in February 2004. Copy-edited in April 2009; re-copy-edited June 2015 – reference # 2 added.
Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.
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