Forum.
Intractability/Refractoriness
Concluding that a symptom is truly refractory is central to the decision to utilize sedation for palliation [Rousseau, 2004]. Nearly every author emphasizes that sedation is appropriate only in the face of intractable symptoms, but the condition of intractability is often not clearly defined. Indeed, Rousseau (2001 AJHPC) asserts that definitions of a refractory symptom can be subjective and ambiguous. Without a better sense of what “intractable” means to various authors, it is impossible to determine, for example, why 52% of Ventafridda’s ( ) subjects, 3% of Mount’s ( ) and 17% of Fainsinger’s ( ) required sedation at end of life. Quill and others emphasise the importance of employing aggressive treatments prior to concluding that a symptom is intractable, but do not describe a systematic process (6,17,21). Krakauer et al assert the need for rigorous assessment and diagnosis of difficult symptoms, which will direct the selection of targeted therapies prior to a consideration of sedation (13). To distinguish “difficult” from “refractory” symptoms Cherny & Portenoy (3) have proposed an algorithm that considers both the potential for alleviating the symptom and the symptom’s tolerability to the patient. They also recommend a systematic approach of assessment, diagnosis, non-invasive interventions, and invasive interventions prior to considering sedation “as a last resort.”
Cherny & Portenoy’s description of an intractable symptom provides guidance for assessment.(3) They portray “intractable” as a multifaceted concept that means more than a symptom that is not responding to therapy. It includes the patient’s perception of severity and tolerability of the symptom and the benefit versus the harm or other losses of various interventions. The patient’s ability to tolerate the symptom is in part related to how quickly it can be controlled, with severe emotional and physical fatigue, as well as psychological factors, influencing the patient’s perception of the intolerability of either the symptom or further attempts to alleviate it.
Other factors influence the determination of intractability, including emotional fatigue of carer and family, ( ) as well as the values and preferences of institutions (Peruselli), professional caregivers, (Werth?) and patients. Intractability has a temporal component, from both the patient’s and the system’s perspective. The practice of intermittent sedation recognizes that either a symptom might respond to continued or future therapy ( ), or that the patient’s ability to tolerate the symptom may be improved following the rest and stress reduction provided by sedation (C & P; Rousseau; Morita; Levy). The task of determining intractability is even more difficult in symptom complexes with poorly defined diagnostic criteria such as terminal restlessness and existential distress (Heyse; Morita 2004; C & P; Rousseau).
Intractable existential distress as an indication for sedation is controversial. Determining intractability is inherently difficult because the condition is not well defined nor universally acknowledged. ( ) Likewise, interventions for existential distress are not as well-defined as for most physical symptoms. (3) Depression, delirium, anxiety, mental anguish, familial discord, and spiritual issues may contribute to the suffering of existential distress, and aggressive interventions directed to those conditions are essential prior to concluding that the condition is intractable. (3, Rousseau 2001; Levy) Use of intermittent sedation as a respite intervention may be a useful part of the assessment of intractability. (3; Rousseau 2001; Morita)
Further, the relative availability of interventions influences the determination of intractability (Levy). A symptom considered to be intractable in a region with few palliative resources may not be considered intractable in a major medical center with an established palliative care team and a much wider array of available interventions. Núñez-Olarte ( ) and ______ ( ) report a decline in the use of a sedating ‘lytic cocktail’ in their respective countries as expertise in symptom management has improved. Consultation, whether local or distant, supplements the expertise of the primary carer or team. With present electronic means of communication increasingly available even in remote areas, informal expert consultation is widely available, increasing the array of options over what was possible just a few years ago. For example, in Argentina ( ), the United Kingdom ( ), and the United States ( , ), palliative care “hotlines” have been established ( , ), and multidisciplinary e-mail discussion boards are available on the Internet ( , , , , , ).
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