Bee Wee

Preparation for palliative care: teaching about death, dying and bereavement in UK medical schools 2000-2001.

Aim  To examine changes in formal teaching about death, dying and bereavement in undergraduate medical education in UK medical schools.

Modafinil for the Treatment of Fatigue in Lung Cancer: Results of a Placebo-Controlled, Double-Blind, Randomized Trial

PURPOSE Fatigue is a distressing symptom occurring in more than 60% of patients with cancer. The CNS stimulants modafinil and methylphenidate are recommended for the treatment of cancer-related fatigue, despite a limited evidence base. We aimed to evaluate the efficacy and tolerability of modafinil in the management of fatigue in patients with non-small-cell lung cancer (NSCLC). PATIENTS AND METHODS Adults with advanced NSCLC and performance status of 0 to 2, who were not treated with chemotherapy or radiotherapy within the last 4 weeks, were randomly assigned to daily modafinil (100 mg on days 1 to 14; 200 mg on days 15 to 28) or matched placebo. The primary outcome was change in Functional Assessment of Chronic Illness Therapy (FACIT) -Fatigue score from baseline to 28 days, adjusted for baseline fatigue and performance status. Secondary outcomes included safety and patient-reported measures of depression, daytime sleepiness, and quality of life. RESULTS A total of 208 patients were randomly assigned, and 160 patients (modafinil, n = 75; placebo, n = 85) completed questionnaires at both baseline and day 28 and were included in the modified intention-to-treat analysis. FACIT-Fatigue scores improved from baseline to day 28 (mean score change: modafinil, 5.29; 95% CI, 2.57 to 8.02; placebo, 5.09; 95% CI, 2.54 to 7.65), but there was no difference between treatments (0.20; 95% CI, -3.56 to 3.97). There was also no difference between treatments for the secondary outcomes; 47% of the modafinil group and 23% of the placebo group stated that the intervention was not helpful. CONCLUSION Modafinil had no effect on cancer-related fatigue and should not be prescribed outside a clinical trial setting. Its use was associated with a clinically significant placebo effect.

The sound of death rattle I: are relatives distressed by hearing this sound?

Background: Death rattle is the noisy, rattling breathing that occurs in many dying patients. Health professionals intervene because the sound is said to distress attendant relatives. We found no formal study to confirm or refute relatives’ distress, so we decided to ask the relatives. Method: Face-to-face semi-structured interviews with 27 bereaved relatives to investigate their experience of terminal care and what their response had been to the sound of death rattle if this had occurred. Interview transcripts were subjected to thematic content analysis. Results: We found that almost half of the 12 relatives who had heard the sound of death rattle had been distressed by it. The others were either neutral about the sound or found it a helpful signal of impending death. Conclusion: We confirmed that some relatives do find it distressing to hear the sound of death rattle. However, our expectation that relatives are universally disturbed by this sound was unfounded. There is no justification for a ‘blanket’ approach to therapeutic intervention when death rattle occurs. A better understanding is required of how relatives make sense of the sound of death rattle.

How useful are systematic reviews for informing palliative care practice? Survey of 25 Cochrane systematic reviews

BackgroundIn contemporary medical research, randomised controlled trials are seen as the gold standard for establishing treatment effects where it is ethical and practical to conduct them. In palliative care such trials are often impractical, unethical, or extremely difficult, with multiple methodological problems. We review the utility of Cochrane reviews in informing palliative care practice.MethodsPublished reviews in palliative care registered with the Cochrane Pain, Palliative and Supportive Care Group as of December 2007 were obtained from the Cochrane Database of Systematic Reviews, issue 1, 2008. We reviewed the quality and quantity of primary studies available for each review, assessed the quality of the review process, and judged the strength of the evidence presented. There was no prior intention to perform any statistical analyses.Results25 published systematic reviews were identified. Numbers of included trials ranged from none to 54. Within each review, included trials were heterogeneous with respect to patients, interventions, and outcomes, and the number of patients contributing to any single analysis was generally much lower than the total included in the review. A variety of tools were used to assess trial quality; seven reviews did not use this information to exclude low quality studies, weight analyses, or perform sensitivity analysis for effect of low quality. Authors indicated that there were frequently major problems with the primary studies, individually or in aggregate. Our judgment was that the reviewing process was generally good in these reviews, and that conclusions were limited by the number, size, quality and validity of the primary studies.We judged the evidence about 23 of the 25 interventions to be weak. Two reviews had stronger evidence, but with limitations due to methodological heterogeneity or definition of outcomes. No review provided strong evidence of no effect.ConclusionCochrane reviews in palliative care are well performed, but fail to provide good evidence for clinical practice because the primary studies are few in number, small, clinically heterogeneous, and of poor quality and external validity. They are useful in highlighting the weakness of the evidence base and problems in performing trials in palliative care.

Recognizing that it is part and parcel of what they do: teaching palliative care to medical students in the UK

In their first year of work, newly qualified doctors will care for patients who have palliative care needs or who are dying, and they will need the skills to do this throughout their medical career. The General Medical Council in the United Kingdom has given clear recommendations that all medical students should receive core teaching on relieving pain and distress together with caring for the terminally ill. However, medical schools provide variable amounts of this teaching; some are able to deliver comprehensive programmes whilst others deliver very little. This paper presents the results of a mixed methods study which explored the structure and content of palliative care teaching in different UK medical schools, and revealed what coordinators are trying to achieve with this teaching. Nationally, coordinators are aiming to help medical students overcome the same fears held by the lay public about death, dying and hospices, to convey that the palliative care approach is applicable to many patients and is part of every doctors’ role, whatever their specialty. Although facts and knowledge were thought to be important, coordinators were more concerned with attitudes and helping individuals with the transition from medical student to foundation doctor, providing an awareness of palliative medicine as a specialty and how to access it for their future patients.

The sound of death rattle II: how do relatives interpret the sound?

Background: In an earlier study, we found that some bereaved relatives (five out of 12 interviewed) found it distressing to hear the sound of death rattle, but the remainder did not. In this paper, we report a second study in which we explored how a different group of relatives interpreted the sound of death rattle when they heard it. Method: We conducted face-to-face semi-structured interviews with 25 bereaved relatives using the principles of grounded theory. Results: Seventeen of the 25 bereaved relatives interviewed had heard the sound of death rattle. Ten relatives were distressed by the sound, but seven were not. Some relatives regarded the sound of death rattle as a useful warning sign that death was imminent. Their interpretation of the sound was influenced by the patient’s appearance, being less concerned if the patient was not obviously disturbed. Relatives were distressed when they thought that the sound of death rattle indicated that the patient might be drowning or choking. These concerns were reinforced by seeing fluid dribble from the dying patient’s mouth. Conclusion: This study confirms the previous finding that not all relatives are distressed by the sound of death rattle. It also demonstrates that relatives interpret the sound in a variety of ways, some matter of fact and some distressing. We suggest that effective communication is helpful in uncovering relatives’ interpretation of death rattle and dispelling unwarranted fears.

Palliative care: a suitable setting for undergraduate interprofessional education

Effective delivery of high-quality palliative care requires effective inter-professional teamworking by skilled health and social care professionals. Palliative care is therefore highly suitable for sowing the seeds of interprofessional teamworking in early professional education. This paper describes experiences of running undergraduate interprofessional workshops in palliative care for medical, nursing, social work, physiotherapy and occupational therapy students. These workshops are unusual in three respects: first, the involvement of family carers mean that these learning experiences are rooted in clinical reality; secondly, there is no attempt to ‘tidy up’ the story for the students; thirdly, unlike many undergraduate interprofessional programmes, these workshops have been sustained over several years. Evaluation of these workshops demonstrate that students value and enjoy the opportunity to work together; they find the experience moving, informative and interesting. Feedback from carers showed that they appreciated the opportunity to present their real-life experiences to students. Our evidence suggests that palliative care is a suitable subject for undergraduate interprofessional education.

A Delphi study to develop the Association for Palliative Medicine consensus syllabus for undergraduate palliative medicine in Great Britain and Ireland

The Association for Palliative Medicine (APM) produced a previous undergraduate palliative medicine syllabus in 1992. This study describes the process of developing the new APM consensus syllabus against the background of changes in medical education and palliative medicine since 1992. The syllabus was derived by means of a Delphi study carried out amongst experts in palliative medicine across Britain and Ireland. Forty-three participants agreed to take part. Three rounds of the Delphi study took place. Consensus (75% agreement) was achieved in over 90% of the outcomes. The new syllabus is broken down into the following sections: basic principles, physical care, psychosocial care, culture, language, religious and spiritual issues, ethics and legal frameworks. Learning outcomes are categorised as essential or desirable. Using a Delphi study, we have developed a consensus syllabus for undergraduate palliative medicine. This is sufficiently flexible to allow all medical schools to ensure that their students achieve the essential learning outcomes by the time they graduate, whereas those with more generous curricular space will additionally be able to deliver selected desirable learning outcomes.

How much does it cost a specialist palliative care unit to manage constipation in patients receiving opioid therapy

The burden of constipation from the patients perspective has been well described. The aim of this study was to evaluate the cost of managing constipation in patients taking opioids in a specialist palliative care inpatient unit. A retrospective review of the medical records of 58 patients (70 admissions) who died during a six-month period was undertaken to identify prescribing patterns for opioids and oral laxatives and tasks associated with managing constipation in these patients. A prospective time and motion study also was undertaken, whereby staff recorded the time and resources required to perform each task. These data were then applied to the actual frequency recorded in the retrospective review to calculate the direct cost of managing constipation in those 70 admissions during that six-month period. There was no discernable pattern in oral laxative prescribing. The mean cost of managing constipation was 29.81 pounds (48.74 USD) per admission, with staff time accounting for 85% of the cost. The most time-consuming activity was staff discussion about bowel management, which occurred at least once daily for doctors and twice for nurses and involved up to eight members of staff at a time. The cost of managing constipation is skewed in that it costs 30 pounds (49 USD) or less in 71% of admissions but exceeded 100 pounds (163 USD) in 5%. In the latter group, earlier and/or more effective intervention for constipation could lead to clinical and economic benefits.

Death rattle: its impact on staff and volunteers in palliative care

Background: Hospice staff and volunteers frequently hear the sound of death rattle and offer explanations and reassurance to relatives and other patients. This paper describes our study into the impact of hearing the sound of death rattle on hospice staff and volunteers, part of our wider investigation into death rattle. Methods: Seven focus group meetings were held, involving a total of 41 participants from medical, nursing, chaplaincy, housekeeping and volunteer backgrounds. Meetings were audio-taped and the transcripts analysed using thematic analysis. Results: Most participants expressed negative feelings about hearing the sound of death rattle and felt that relatives were also distressed by it. Medical and nursing participants reported diverse views on why they intervene. Some acknowledged the influence of their own emotional response to the sound. Others felt that intervention was part of their professional role or that the existence of a therapeutic option made it necessary to intervene. Conclusion: Death rattle has a negative impact on staff and volunteers who work with dying patients. This effect may influence their decision to intervene when death rattle occurs. Doctors and nurses need to consider why, when and how they intervene and the consequences of that intervention.