Terminal sedation is a phrase that has appeared in the palliative care literature in the last few years. There has not been a clear definition proposed for this term, nor has there been any agreement on the frequency with which the technique is used. A postal survey of 61 selected palliative care experts (59 physicians, two nurses) was carried out to examine their response to a proposed definition for 'terminal sedation', to estimate the frequency of this practice and the reasons for its use, to identify the drugs and dosages used, to determine the outcome, and to explore the decision-making process. Opinions on physician-assisted suicide and voluntary euthanasia were also sought. Eighty-seven per cent of the experts responded from eight countries, although predominantly from Canada and the United Kingdom. Forty per cent agreed unequivocally with the proposed definition, while 4% disagreed completely. Eighty-nine per cent agreed that 'terminal sedation' is sometimes necessary and 77% reported using it in the last 12 months--over half of these for up to four patients. Reasons for using this method included various physical and psychological symptoms. The most common drugs used were midazolam and methotrimeprazine. Decision making usually involved the patient or family, and varied with respect to the ease with which the decision was made. The use of sedation was perceived to be successful in 90 out of 100 patients recalled. Ninety per cent of respondents did not support legalization of euthanasia. In conclusion, sedating agents are used by palliative care experts as tools for the management of symptoms. The term 'terminal sedation' should be abandoned and replaced with the phrase 'sedation for intractable distress in the dying'. Further research into the management of intractable symptoms and suffering is warranted.
Background: In jurisdictions that permit euthanasia or physician-assisted suicide, patients with cancer comprise the largest group to die by these methods. We investigated the personal attitudes toward these practices of patients receiving palliative care for advanced cancer.Methods: Seventy patients (32 men and 38 women; median survival, 44.5 days) took part in a survey using in-depth semistructured interviews. The interviews were audiotaped for transcription and content analysis of themes.Results: Most participants (73%) believed that euthanasia or physician-assisted suicide should be legalized, citing pain and the individual's right to choose as their major reasons. Participants who were opposed to legalization cited religious and moral objections as their central concerns. Forty (58%) of the 69 participants who completed the entire interview also believed that, if legal, they
Objective: Assessment in palliative care requires a multidimensional review of physical symptoms and psychosocial concerns in a format appropriate for patients with advanced illness. In this study, we describe the initial development and validation of a structured interview for assessing common symptoms and concerns faced by terminally ill individuals.
Method:We constructed a 13-item Structured Interview for Symptoms and Concerns (SISC) based on a review of end-of-life issues and administered it to 69 patients receiving palliative care for advanced cancer. Along with the interview, each participant completed visual analog scales (VAS) addressing the same constructs. Test-retest and interrater reliability were determined, as was the concordance between interview ratings and VAS scores.Results: Overall, the interview items had excellent interrater reliability (intraclass correlations were > 0.90) and at least moderate temporal stability (test-retest correlations ranged from 0.50 to 0.90). Concurrent validity was evident in the good concordance between interview items and VAS measures (correlations were > 0.70). The SISC was also sensitive to individual differences between subgroups of participants who did or did not meet diagnostic criteria for anxiety or depressive disorders.
Conclusions:This study demonstrates that structured interviews provide a reliable and valid approach to assessment in palliative care and may be an appropriate alternative for some research applications. (Can J Psychiatry 2004;49:350-358)
Although coping is an important research theme within psycho-oncology, it may be overly broad to ask, "How do people cope with cancer"? In fact, different cancer-related stressors are coped with in very different ways. There is not necessarily any particular pattern of coping that is best for relieving psychological distress.
Single-dose inhalation of fentanyl citrate was associated with significant and potentially clinically important improvements in exercise tolerance in COPD. These improvements were accompanied by a delay in the onset of intolerable dyspnea during exercise near the limits of tolerance.
Little is known about the decision-making needs of terminally ill women who are considering options for place of care at the end of life. A pilot study was conducted with a sample of 20 terminally ill women with advanced cancer to identify factors taken into consideration in making this decision. Participants were interviewed using a semistructured questionnaire incorporating the domains of quality of end-of-life care and based on the Ottawa Decision Support Framework. Results suggested a gap between the preferred (home, n=13) and the actual (palliative care unit, n=16) place of care. Discrepancies about place of care may be related to conflicting subjective factors such as being a burden to family versus having the opportunity to strengthen relationships with family and friends. Participants who were actively engaged in making the decision scored the highest levels of decisional conflict. Previous studies have shown an association between high decisional conflict scores and decision delay. Although findings from this small study are preliminary, they suggest that the decision regarding place of terminal care is complex with multiple competing factors being considered.
The objective of this study is to estimate the direct medical cost of end-of-life and palliative (EOL/PAL) care for cancer patients during the last six months of their lives — or, during the period from diagnosis to death, if briefer — in 2002 and 2003, in Ontario, Canada. A linkage of cancer registry and administrative data is used to determine the costs of health care resources used during the EOL/PAL care period. Costs are analyzed by cancer diagnosis, location of death, and type of service. The total Ontario Ministry of Health-funded cost of EOL/PAL care for cancer patients is estimated to be about CAD$544 million per year, with an average per patient cost of about $25,000 in 2002–2003. Our results suggest that acute care consumes 75 percent of EOL/PAL funding and that only a small proportion of health care services used by EOL/PAL care cancer patients is likely to be formal palliative care.
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