The issue of symptom management at the end of life and the need to use sedation has become a controversial topic. This debate has been intensified by the suggestion that sedation may correlate with 'slow euthanasia'. The need to have more facts and less anecdote was a motivating factor in this multicentre study. Four palliative care programmes in Israel, South Africa, and Spain agreed to participate. The target population was palliative care patients in an inpatient setting. Information was collected on demographics, major symptom distress, and intent and need to use sedatives in the last week of life. Further data on level of consciousness, adequacy of symptom control, and opioids and psychotropic agents used during the final week of life was recorded. As the final week of life can be difficult to predict, treating physicians were asked to complete the data at the time of death. The data available for analysis included 100 patients each from Israel and Madrid, 94 patients from Durban, and 93 patients from Cape Town. More than 90% of patients required medical management for pain, dyspnoea, delirium and/or nausea in the final week of life. The intent to sedate varied from 15% to 36%, with delirium being the most common problem requiring sedation. There were variations in the need to sedate patients for dyspnoea, and existential and family distress. Midazolam was the most common medication prescribed to achieve sedation. The diversity in symptom distress, intent to sedate and use of sedatives, provides further knowledge in characterizing and describing the use of deliberate pharmacological sedation for problematic symptoms at the end of life. The international nature of the patient population studied enhances our understanding of potential differences in definition of symptom issues, variation of clinical practice, and cultural and psychosocial influences.
This study attempted to assess the degree of knowledge of the diagnosis, and the attitude towards that information, in a group of terminally ill cancer patients. We also tried to determine the influence of the knowledge of the diagnosis on other patient psychosocial needs. We assessed 97 patients (64 in an oncology service, 33 in a palliative care unit) by means of a semistructured personal interview, and a psychosocial needs questionnaire. Data collected showed that 68% of patients had not been informed of their diagnosis; 60% of this group had a high degree of suspicion of their diagnosis, but 42% of noninformed patients did not want to receive more information. Information on diagnosis appears to be beneficial in establishing satisfactory relationships and communication between patients and relatives and staff. We have tried to answer the most relevant issues related to diagnosis disclosure in our clinical setting, questioning the feasibility of truth telling within our cultural boundaries.
A previous multicentre international study on sedation at the end of life has detected major differences between Canadian and Spanish patients. This was particularly evident in the need to sedate Spanish patients for psychological/existential distress. This study was designed to explore the hypothesis that marked differences in the value patients and families attach to disclosure and cognition were a factor. The study population included patients referred to two palliative care consulting services based in acute care hospitals in Madrid, Spain (M), and in Edmonton, Canada (E). Questions addressed the issue of clear thinking, pain/nausea-medication-induced somnolence/confusion, anxiety/antidepressant-medication-induced somnolence/confusion, details of diagnosis. One hundred patients were evaluated on each site. Patients and families in E placed a higher value on clear thinking, change in medication causing somnolence/confusion, and wanting full disclosure. Patients and families in E agreed almost 100% of the time, while agreement in M varied from 42% to 67%. These results suggest major differences in the perceived value of clear cognition and disclosure of information between patients and families in E and M. The lack of agreement between patients and families in M is a further significant factor that may complicate communication with patients and families, as well as medical management.
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