register interest

Professor Bee Wee

Research Area: Health Evaluative Methodologies
Technology Exchange: Bioinformatics and Medical statistics
Scientific Themes: Cancer Biology
Keywords: palliative care, palliative care rehabilitation, end of life care and symptom management
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The Palliative Care Research Group is based in the Sobell Study Centre (SSC) at Sir Michael Sobell House (specialist palliative care service), Churchill Hospital. SSC provides leadership and administrative support for a programme of palliative care education, research and continuing professional development for health and social work professionals in Oxford, nationally and internationally. Palliative care research is still in early development. There are three threads to palliative care research in Oxford: symptom management, end-of-life care and rehabilitation. Each of these threads can be woven around most of the themes of the Biomedical Research Centre at Oxford, in particular, blood and cancer, diabetes, heart and stroke, brain, women and chronic diseases. Examples of current projects: death rattle; fatigue in advanced cancer; end-of-life care in stroke patients. At the international level, the PLATO Project (www.platoproject.net) provides a platform for collaborative research and education between Oxford and our palliative care partners in Argentina and South Africa.

Name Department Institution Country
Gustavo de Simone Pallium Latinoamerica Argentina
Elizabeth Gwyther Hospice and Palliative Care Africa South Africa
Derry S, Wiffen PJ, Moore RA, McNicol ED, Bell RF, Carr DB, McIntyre M, Wee B. 2017. Oral nonsteroidal anti-inflammatory drugs (NSAIDs) for cancer pain in adults. Cochrane Database Syst Rev, 7 (7), pp. CD012638. | Show Abstract | Read more

BACKGROUND: Pain is a common symptom with cancer, and 30% to 50% of all people with cancer will experience moderate to severe pain that can have a major negative impact on their quality of life. Non-opioid drugs are commonly used to treat cancer pain, and are recommended for this purpose in the World Health Organization (WHO) cancer pain treatment ladder, either alone or in combination with opioids.A previous Cochrane review that examined the evidence for nonsteroidal anti-inflammatory drugs (NSAIDs) or paracetamol, alone or combined with opioids, for cancer pain was withdrawn in 2015 because it was out of date; the date of the last search was 2005. This review, and another on paracetamol, updates the evidence. OBJECTIVES: To assess the efficacy of oral NSAIDs for cancer pain in adults, and the adverse events reported during their use in clinical trials. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, and Embase from inception to April 2017, together with reference lists of retrieved papers and reviews, and two online study registries. SELECTION CRITERIA: We included randomised, double-blind, single-blind, or open-label studies of five days' duration or longer, comparing any oral NSAID alone with placebo or another NSAID, or a combination of NSAID plus opioid with the same dose of the opioid alone, for cancer pain of any pain intensity. The minimum study size was 25 participants per treatment arm at the initial randomisation. DATA COLLECTION AND ANALYSIS: Two review authors independently searched for studies, extracted efficacy and adverse event data, and examined issues of study quality and potential bias. We did not carry out any pooled analyses. We assessed the quality of the evidence using GRADE and created a 'Summary of findings' table. MAIN RESULTS: Eleven studies satisfied inclusion criteria, lasting one week or longer; 949 participants with mostly moderate or severe pain were randomised initially, but fewer completed treatment or had results of treatment. Eight studies were double-blind, two single-blind, and one open-label. None had a placebo only control; eight compared different NSAIDs, three an NSAID with opioid or opioid combination, and one both. None compared an NSAID plus opioid with the same dose of opioid alone. Most studies were at high risk of bias for blinding, incomplete outcome data, or small size; none was unequivocally at low risk of bias.It was not possible to compare NSAIDs as a group with another treatment, or one NSAID with another NSAID. Results for all NSAIDs are reported as a randomised cohort. We judged results for all outcomes as very low-quality evidence.None of the studies reported our primary outcomes of participants with pain reduction of at least 50%, and at least 30%, from baseline; participants with Patient Global Impression of Change (PGIC) of much improved or very much improved (or equivalent wording). With NSAID, initially moderate or severe pain was reduced to no worse than mild pain after one or two weeks in four studies (415 participants in total), with a range of estimates between 26% and 51% in individual studies.Adverse event and withdrawal reporting was inconsistent. Two serious adverse events were reported with NSAIDs, and 22 deaths, but these were not clearly related to any pain treatment. Common adverse events were thirst/dry mouth (15%), loss of appetite (14%), somnolence (11%), and dyspepsia (11%). Withdrawals were common, mostly because of lack of efficacy (24%) or adverse events (5%). AUTHORS' CONCLUSIONS: There is no high-quality evidence to support or refute the use of NSAIDs alone or in combination with opioids for the three steps of the three-step WHO cancer pain ladder. There is very low-quality evidence that some people with moderate or severe cancer pain can obtain substantial levels of benefit within one or two weeks.

Wiffen PJ, Derry S, Moore RA, McNicol ED, Bell RF, Carr DB, McIntyre M, Wee B. 2017. Oral paracetamol (acetaminophen) for cancer pain. Cochrane Database Syst Rev, 7 (7), pp. CD012637. | Show Abstract | Read more

BACKGROUND: Pain is a common symptom with cancer, and 30% to 50% of all people with cancer will experience moderate to severe pain that can have a major negative impact on their quality of life. Non-opioid drugs are commonly used to treat mild to moderate cancer pain, and are recommended for this purpose in the WHO cancer pain treatment ladder, either alone or in combination with opioids.A previous Cochrane review that examined the evidence for nonsteroidal anti-inflammatory drugs (NSAIDs) or paracetamol, alone or combined with opioids, for cancer pain was withdrawn in 2015 because it was out of date; the date of the last search was 2005. This review, and another on NSAIDs, updates the evidence. OBJECTIVES: To assess the efficacy of oral paracetamol (acetaminophen) for cancer pain in adults and children, and the adverse events reported during its use in clinical trials. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, and Embase from inception to March 2017, together with reference lists of retrieved papers and reviews, and two online study registries. SELECTION CRITERIA: We included randomised, double-blind, studies of five days' duration or longer, comparing paracetamol alone with placebo, or paracetamol in combination with an opioid compared with the same dose of the opioid alone, for cancer pain of any intensity. Single-blind and open studies were also eligible for inclusion. The minimum study size was 25 participants per treatment arm at the initial randomisation. DATA COLLECTION AND ANALYSIS: Two review authors independently searched for studies, extracted efficacy and adverse event data, and examined issues of study quality and potential bias. We did not carry out any pooled analyses. We assessed the quality of the evidence using GRADE and created a 'Summary of findings' table. MAIN RESULTS: Three studies in adults satisfied the inclusion criteria, lasting up to one week; 122 participants were randomised initially, and 95 completed treatment. We found no studies in children. One study was parallel-group, and two had a cross-over design. All used paracetamol as an add-on to established treatment with strong opioids (median daily morphine equivalent doses of 60 mg, 70 mg, and 225 mg, with some participants taking several hundred mg of oral morphine equivalents daily). Other non-paracetamol medication included non-steroidal anti-inflammatory drugs (NSAIDs), tricyclic antidepressants, or neuroleptics. All studies were at high risk of bias for incomplete outcome data and small size; none was unequivocally at low risk of bias.None of the studies reported any of our primary outcomes: participants with pain reduction of at least 50%, and at least 30%, from baseline; participants with pain no worse than mild at the end of the treatment period; participants with Patient Global Impression of Change (PGIC) of much improved or very much improved (or equivalent wording). What pain reports there were indicated no difference between paracetamol and placebo when added to another treatment. There was no convincing evidence of paracetamol being different from placebo with regards to quality of life, use of rescue medication, or participant satisfaction or preference. Measures of harm (serious adverse events, other adverse events, and withdrawal due to lack of efficacy) were inconsistently reported and provided no clear evidence of difference.Our GRADE assessment of evidence quality was very low for all outcomes, because studies were at high risk of bias from several sources. AUTHORS' CONCLUSIONS: There is no high-quality evidence to support or refute the use of paracetamol alone or in combination with opioids for the first two steps of the three-step WHO cancer pain ladder. It is not clear whether any additional analgesic benefit of paracetamol could be detected in the available studies, in view of the doses of opioids used.

Wiffen PJ, Wee B, Derry S, Bell RF, Moore RA. 2017. Opioids for cancer pain - an overview of Cochrane reviews. Cochrane Database Syst Rev, 7 (7), pp. CD012592. | Show Abstract | Read more

BACKGROUND: Pain is a common symptom with cancer, and 30% to 50% of all people with cancer will experience moderate to severe pain that can have a major negative impact on their quality of life. Opioid (morphine-like) drugs are commonly used to treat moderate or severe cancer pain, and are recommended for this purpose in the World Health Organization (WHO) pain treatment ladder. The most commonly-used opioid drugs are buprenorphine, codeine, fentanyl, hydrocodone, hydromorphone, methadone, morphine, oxycodone, tramadol, and tapentadol. OBJECTIVES: To provide an overview of the analgesic efficacy of opioids in cancer pain, and to report on adverse events associated with their use. METHODS: We identified systematic reviews examining any opioid for cancer pain published to 4 May 2017 in the Cochrane Database of Systematic Reviews in the Cochrane Library. The primary outcomes were no or mild pain within 14 days of starting treatment, withdrawals due to adverse events, and serious adverse events. MAIN RESULTS: We included nine reviews with 152 included studies and 13,524 participants, but because some studies appeared in more than one review the number of unique studies and participants was smaller than this. Most participants had moderate or severe pain associated with a range of different types of cancer. Studies in the reviews typically compared one type of opioid or formulation with either a different formulation of the same opioid, or a different opioid; few included a placebo control. Typically the reviews titrated dose to effect, a balance between pain relief and adverse events. Various routes of administration of opioids were considered in the reviews; oral with most opioids, but transdermal administration with fentanyl, and buprenorphine. No review included studies of subcutaneous opioid administration. Pain outcomes reported were varied and inconsistent. The average size of included studies varied considerably between reviews: studies of older opioids, such as codeine, morphine, and methadone, had low average study sizes while those involving newer drugs tended to have larger study sizes.Six reviews reported a GRADE assessment (buprenorphine, codeine, hydromorphone, methadone, oxycodone, and tramadol), but not necessarily for all comparisons or outcomes. No comparative analyses were possible because there was no consistent placebo or active control. Cohort outcomes for opioids are therefore reported, as absolute numbers or percentages, or both.Reviews on buprenorphine, codeine with or without paracetamol, hydromorphone, methadone, tramadol with or without paracetamol, tapentadol, and oxycodone did not have information about the primary outcome of mild or no pain at 14 days, although that on oxycodone indicated that average pain scores were within that range. Two reviews, on oral morphine and transdermal fentanyl, reported that 96% of 850 participants achieved that goal.Adverse event withdrawal was reported by five reviews, at rates of between 6% and 19%. Participants with at least one adverse event were reported by three reviews, at rates of between 11% and 77%.Our GRADE assessment of evidence quality was very low for all outcomes, because many studies in the reviews were at high risk of bias from several sources, including small study size. AUTHORS' CONCLUSIONS: The amount and quality of evidence around the use of opioids for treating cancer pain is disappointingly low, although the evidence we have indicates that around 19 out of 20 people with moderate or severe pain who are given opioids and can tolerate them should have that pain reduced to mild or no pain within 14 days. This accords with the clinical experience in treating many people with cancer pain, but overstates to some extent the effectiveness found for the WHO pain ladder. Most people will experience adverse events, and help may be needed to manage the more common undesirable adverse effects such as constipation and nausea. Perhaps between 1 in 10 and 2 in 10 people treated with opioids will find these adverse events intolerable, leading to a change in treatment.

Walker S, Gibbins J, Paes P, Adams A, Chandratilake M, Gishen F, Lodge P, Wee B, Barclay S. 2017. Palliative care education for medical students: Differences in course evolution, organisation, evaluation and funding: A survey of all UK medical schools. Palliat Med, 31 (6), pp. 575-581. | Show Abstract | Read more

BACKGROUND: A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools. AIMS: To investigate the evolution and structure of palliative care teaching at UK medical schools. DESIGN: Anonymised, web-based questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 UK medical schools. RESULTS: The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (<1-16 h). In all, 17/29 (59%) had attended a teaching course or shared duties with a colleague who had done so. Course organisers received titular recognition in 18/27 (67%; no title 9 (33%); unknown 3 (11%)). An academic department of Palliative Medicine existed in 12/30 (40%) medical schools. Funding was not universally transparent. Palliative care teaching was associated with some form of funding in 20/30 (66%). CONCLUSION: Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.

Wiffen PJ, Derry S, Moore RA, Mcnicol ED, Bell RF, Carr DB, Mcintyre M, Wee B. 2017. Oral paracetamol (acetaminophen) for cancer pain Cochrane Database of Systematic Reviews, 2017 (4), | Show Abstract | Read more

© 2017 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To assess the efficacy of oral paracetamol (acetaminophen) for cancer pain in adults and children, and the adverse events associated with its use in clinical trials.

Derry S, Wiffen PJ, Moore RA, Mcnicol ED, Bell RF, Carr DB, Mcintyre M, Wee B. 2017. Oral nonsteroidal anti-inflammatory drugs (NSAIDs) for cancer pain in adults Cochrane Database of Systematic Reviews, 2017 (4), | Show Abstract | Read more

© 2017 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To assess the efficacy of oral NSAIDs for cancer pain in adults, and the adverse events associated with their use in clinical trials.

Walker S, Gibbins J, Paes P, Barclay S, Adams A, Chandratilake M, Gishen F, Lodge P, Wee B. 2017. Preparing future doctors for palliative care: views of course organisers. BMJ Support Palliat Care, pp. bmjspcare-2017-001319-bmjspcare-2017-001319. | Show Abstract | Read more

BACKGROUND: Effective training at medical school is essential to prepare new doctors to safely manage patients with palliative care (PC) and end of life care (EOLC) needs. The contribution of undergraduate PC course organisers is central but their collective views regarding role are unknown. OBJECTIVE: To survey attitudes of PC course organisers regarding their course, organisation, the adequacy of training provided and level of personal satisfaction. METHODS: An anonymised, multifactorial, web-based questionnaire was devised, tested, modified and then sent to lead PC course organisers at all UK medical schools. RESULTS: Data were obtained from all 30 UK medical schools. Organisers agreed/strongly agreed (=agreed) that their PC course was highly rated by students (26, 87%). 25 (83%) agreed their course 'enabled misconceptions and fears about PC, death, dying and bereavement to be addressed', 'delivered quality PC training' (23, 77%), 'fulfilled General Medical Council requirements' (19, 63%), 'prepared students well to care for patients with PC/EOLC needs' (18, 60%) and 'enabled students to visit a hospice and see the role of doctors in caring for the dying' (17, 57%). Concerns were limited capacity to accommodate students (agreed 20, 66%) and variability in teaching according to location (15, 50%). Most agreed their institution recognised PC training as important (22, 73%), they felt supported by colleagues (21, 70%) and experienced cooperation between stakeholders (20, 67%). All agreed that PC training was essential for undergraduates, while 29 (97%) supported inclusion of a hospice visit in the curriculum. 27 agreed that their role was satisfying (90%), 3 disagreed (10%). CONCLUSIONS: Approximately two-thirds of organisers were generally positive about their PC course, institution and role. A minority expressed concerns; these may reflect suboptimal PC training at their medical school and poor preparation of new doctors.

Bristowe K, Hodson M, Wee B, Almack K, Johnson K, Daveson BA, Koffman J, McEnhill L, Harding R. 2017. Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med, pp. 269216317705102. | Show Abstract | Read more

BACKGROUND: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. AIM: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. DESIGN: Semi-structured in-depth qualitative interviews analysed using thematic analysis. SETTING/PARTICIPANTS: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). RESULTS: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. CONCLUSION: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

Wiffen PJ, Wee B, Derry S, Bell RF, Moore RA. 2017. Opioids for cancer pain - an overview of Cochrane reviews Cochrane Database of Systematic Reviews, 2017 (3), | Show Abstract | Read more

© 2017 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. This is a protocol for a Cochrane Review (Overview). The objectives are as follows: To provide an overview of the analgesic efficacy of opioids in cancer pain, and to report on adverse events associated with their use.

Sutherland A, Naessens K, Plugge E, Head K, Burton MJ, Wee B. 2017. Olanzapine for the prevention and treatment of cancer-related nausea and vomiting in adults Cochrane Database of Systematic Reviews, 2017 (2), | Show Abstract | Read more

© 2017 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To assess the efficacy and safety of olanzapine when used as an anti-emetic in the prevention and treatment of nausea and vomiting related to cancer in adults.

Wee B. 2016. Ambitions for palliative and end-of-life care. Clin Med (Lond), 16 (3), pp. 213-214. | Read more

Davies JM, Gao W, Sleeman KE, Lindsey K, Murtagh FE, Teno JM, Deliens L, Wee B, Higginson IJ, Verne J. 2016. Using routine data to improve palliative and end of life care. BMJ Support Palliat Care, 6 (3), pp. 257-262. | Show Abstract | Read more

Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

Shepperd S, Gonçalves-Bradley DC, Straus SE, Wee B. 2016. Hospital at home: home-based end-of-life care. Cochrane Database Syst Rev, 2 (2), pp. CD009231. | Show Abstract | Read more

BACKGROUND: The policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fourth update of the original review. OBJECTIVES: To determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs, and caregivers, compared with inpatient hospital or hospice care. SEARCH METHODS: We searched the following databases until April 2015: Cochrane Central Register of Controlled Trials (CENTRAL) (the Cochrane Library), Ovid MEDLINE(R) (from 1950), EMBASE (from 1980), CINAHL (from 1982), and EconLit (from 1969). We checked the reference lists of potentially relevant articles identified and handsearched palliative care publications, clinical trials registries, and a database of systematic reviews for related trials (PDQ-Evidence 2015). SELECTION CRITERIA: Randomised controlled trials, interrupted time series, or controlled before and after studies evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible, we reported the results from individual studies. MAIN RESULTS: We included four trials in this review and did not identify new studies from the search in April 2015. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (risk ratio (RR) 1.33, 95% confidence interval (CI) 1.14 to 1.55, P = 0.0002; Chi(2) = 1.72, df = 2, P = 0.42, I(2) = 0%; 3 trials; N = 652; high quality evidence). Admission to hospital while receiving home-based end-of-life care varied between trials, and this was reflected by a high level of statistical heterogeneity in this analysis (range RR 0.62 to RR 2.61; 4 trials; N = 823; moderate quality evidence). Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up and reduce it at six-month follow-up (2 trials; low quality evidence). The effect on caregivers is uncertain (2 trials; low quality evidence). The intervention may slightly reduce healthcare costs (2 trials, low quality evidence). No trial reported costs to patients and caregivers. AUTHORS' CONCLUSIONS: The evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home, although the numbers of people admitted to hospital while receiving end-of-life care should be monitored. Future research should systematically assess the impact of home-based end-of-life care on caregivers.

Walker S, Gibbins J, Barclay S, Adams A, Paes P, Chandratilake M, Gishen F, Lodge P, Wee B. 2016. Progress and divergence in palliative care education for medical students: A comparative survey of UK course structure, content, delivery, contact with patients and assessment of learning. Palliat Med, 30 (9), pp. 834-842. | Show Abstract | Read more

BACKGROUND: Effective undergraduate education is required to enable newly qualified doctors to safely care for patients with palliative care and end-of-life needs. The status of palliative care teaching for UK medical students is unknown. AIM: To investigate palliative care training at UK medical schools and compare with data collected in 2000. DESIGN: An anonymised, web-based multifactorial questionnaire. SETTINGS/PARTICIPANTS: Results were obtained from palliative care course organisers at all 30 medical schools in 2013 and compared with 23 medical schools (24 programmes) in 2000. RESULTS: All continue to deliver mandatory teaching on 'last days of life, death and bereavement'. Time devoted to palliative care teaching time varied (2000: 6-100 h, mean 20 h; 2013: 7-98 h, mean 36 h, median 25 h). Current palliative care teaching is more integrated. There was little change in core topics and teaching methods. New features include 'involvement in clinical areas', participation of patient and carers and attendance at multidisciplinary team meetings. Hospice visits are offered (22/24 (92%) vs 27/30 (90%)) although they do not always involve patient contact. There has been an increase in students' assessments (2000: 6/24, 25% vs 2013: 25/30, 83%) using a mixture of formative and summative methods. Some course organisers lack an overview of what is delivered locally. CONCLUSION: Undergraduate palliative care training continues to evolve with greater integration, increased teaching, new delivery methods and wider assessment. There is a trend towards increased patient contact and clinical involvement. A minority of medical schools offer limited teaching and patient contact which could impact on the delivery of safe palliative care by newly qualified doctors.

Wiffen PJ, Wee B, Moore RA. 2016. Oral morphine for cancer pain. Cochrane Database Syst Rev, 4 (4), pp. CD003868. | Show Abstract | Read more

BACKGROUND: This is the third updated version of a Cochrane review first published in Issue 4, 2003 of The Cochrane Library and first updated in 2007. Morphine has been used for many years to relieve pain. Oral morphine in either immediate release or modified release form remains the analgesic of choice for moderate or severe cancer pain. OBJECTIVES: To determine the efficacy of oral morphine in relieving cancer pain, and to assess the incidence and severity of adverse events. SEARCH METHODS: We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL 2015, Issue 9); MEDLINE (1966 to October 2015); and EMBASE (1974 to October 2015). We also searched ClinicalTrials.gov (1 October 2015). SELECTION CRITERIA: Published randomised controlled trials (RCTs) using placebo or active comparators reporting on the analgesic effect of oral morphine in adults and children with cancer pain. We excluded trials with fewer than 10 participants. DATA COLLECTION AND ANALYSIS: One review author extracted data, which were checked by another review author. There were insufficient comparable data for meta-analysis to be undertaken or to produce numbers needed to treat (NNTs) for the analgesic effect. We extracted any available data on the number or proportion of participants with 'no worse than mild pain' or treatment success (very satisfied, or very good or excellent on patient global impression scales). MAIN RESULTS: We identified seven new studies in this update. We excluded six, and one study is ongoing so also not included in this update. This review contains a total of 62 included studies, with 4241 participants. Thirty-six studies used a cross-over design ranging from one to 15 days, with the greatest number (11) for seven days for each arm of the trial. Overall we judged the included studies to be at high risk of bias because the methods of randomisation and allocation concealment were poorly reported. The primary outcomes for this review were participant-reported pain and pain relief.Fifteen studies compared oral morphine modified release (Mm/r) preparations with morphine immediate release (MIR). Fourteen studies compared Mm/r in different strengths; six of these included 24-hour modified release products. Fifteen studies compared Mm/r with other opioids. Six studies compared MIR with other opioids. Two studies compared oral Mm/r with rectal Mm/r. Three studies compared MIR with MIR by a different route of administration. Two studies compared Mm/r with Mm/r at different times and two compared MIR with MIR given at a different time. One study was found comparing each of the following: Mm/r tablet with Mm/r suspension; Mm/r with non-opioids; MIR with non-opioids; and oral morphine with epidural morphine.In the previous update, a standard of 'no worse than mild pain' was set, equivalent to a score of 30/100 mm or less on a visual analogue pain intensity scale (VAS), or the equivalent in other pain scales. Eighteen studies achieved this level of pain relief on average, and no study reported that good levels of pain relief were not attained. Where results were reported for individual participants in 17 studies, 'no worse than mild pain' was achieved by 96% of participants (362/377), and an outcome equivalent to treatment success in 63% (400/638).Morphine is an effective analgesic for cancer pain. Pain relief did not differ between Mm/r and MIR. Modified release versions of morphine were effective for 12- or 24-hour dosing depending on the formulation. Daily doses in studies ranged from 25 mg to 2000 mg with an average of between 100 mg and 250 mg. Dose titration was undertaken with both instant release and modified release products. A small number of participants did not achieve adequate analgesia with morphine. Adverse events were common, predictable, and approximately 6% of participants discontinued treatment with morphine because of intolerable adverse events.The quality of the evidence is generally poor. Studies are old, often small, and were largely carried out for registration purposes and therefore were only designed to show equivalence between different formulations. AUTHORS' CONCLUSIONS: The conclusions have not changed for this update. The effectiveness of oral morphine has stood the test of time, but the randomised trial literature for morphine is small given the importance of this medicine. Most trials recruited fewer than 100 participants and did not provide appropriate data for meta-analysis. Only a few reported how many people had good pain relief, but where it was reported, over 90% had no worse than mild pain within a reasonably short time period. The review demonstrates the wide dose range of morphine used in studies, and that a small percentage of participants are unable to tolerate oral morphine. The review also shows the wide range of study designs, and inconsistency in cross-over designs. Trial design was frequently based on titration of morphine or comparator to achieve adequate analgesia, then crossing participants over in cross-over design studies. It was not clear if these trials were sufficiently powered to detect any clinical differences between formulations or comparator drugs. New studies added to the review for the previous update reinforced the view that it is possible to use modified release morphine to titrate to analgesic effect. There is qualitative evidence that oral morphine has much the same efficacy as other available opioids.

Peters M, Michels C, Adams A, Wee B, Boulton M. 2015. Carer outcomes in palliative care: a systematic review of the measures and their psychometric properties QUALITY OF LIFE RESEARCH, 24 pp. 79-79.

Michels CT, Boulton M, Adams A, Wee B, Peters M. 2016. Psychometric properties of carer-reported outcome measures in palliative care: A systematic review. Palliat Med, 30 (1), pp. 23-44. | Show Abstract | Read more

BACKGROUND: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers' outcomes is a common problem. AIM: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures' psychometric properties. DESIGN: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure. DATA SOURCES: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts. RESULTS: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care. CONCLUSION: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.

Wee B. 2015. Bee Wee: Determined, resourceful, considerate. BMJ, 350 (apr15 3), pp. h1846. | Read more

Curtin J, Walthall H, Wee B, Watson E. 2015. Communication in advanced cancer care: designing a video-based research study PSYCHO-ONCOLOGY, 24 pp. 14-14.

Casanas i Comabella C, Boulton M, Watson E, Wee B. 2015. Distance caregivers in palliative care: a hidden population with specific needs PSYCHO-ONCOLOGY, 24 pp. 3-3.

Curtin J, Walthall H, Wee B, Watson E. 2015. Fatigue in advanced cancer: why is it under-reported and poorly managed? PSYCHO-ONCOLOGY, 24 pp. 14-14.

Walker S, Gishen F, Lodge P, Wee B. 2015. Teaching palliative care (pc) to medical students; are we developing safe practitioners? BMJ Support Palliat Care, 5 (1), pp. 106. | Show Abstract | Read more

INTRODUCTION: Appropriate training is essential to ensure PC is safely practised(1). A proportion of newly qualified doctors report that undergraduate teaching has not adequately prepared them to manage PC patients.(2) Little is known about how PC training is delivered across UK medical schools(3). Addressing this requires key data; one group likely to have an overview are the responsible PC educational leads. AIMS AND METHODS: To undertake a comprehensive review of PC teaching across UK medical schools by means of an anonymised, multifactorial questionnaire of educational leads. A 40-point questionnaire was developed using SurveyMonkey® and sent to PC educational leads at all 30 UK medical schools. This study received ethical approval. RESULTS: The response was 100%. PC teaching occurred in all institutions. In 20 (67%), there was a formal PC component. Teaching around last days of life, death and bereavement was mandatory. Training in other areas (e.g. emergencies) was sometimes optional. Teaching was generally 'integrated' (15 respondents) and/or 'formed a module' within a larger course (17 respondents) and generally occurred in the final 2 years. A student selected component was offered by 27 (90%). Most respondents were positive about their courses which, in general, were well supported locally, personally satisfying and highly rated by students. CONCERNS INCLUDED: Limited student placements (20, 66%). Restricted opportunity to visit a hospice and observe MDT care (10, 33%) Insufficient teachers (22, 73%) Insufficient funding (10, 33%) Variability in teaching (15, 50%) Whether courses prepared doctors to care for PC patients (9, 30%) delivered quality training (5, 17%) and fulfilled GMC requirements (2, 7%). CONCLUSIONS: PC training for medical students in the UK continues to evolve with greater integration into the curriculum and the wider use of learning assessment. There is, however, variability, which has the potential to affect patient safety, with a minority of medical schools offering limited teaching and patient contact.

Visser C, Hadley G, Wee B. 2015. Reality of evidence-based practice in palliative care. Cancer Biol Med, 12 (3), pp. 193-200. | Show Abstract | Read more

There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by 'gold standard' randomised controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end of life care involves considerations of the patient's physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. The future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a 'mixed methods approach' are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes.

Wee B. 2014. One Chance to Get it Right: A new vision for the care of the dying European Journal of Palliative Care, 21 (5), pp. 213.

Cui J, Zhou L, Wee B, Shen F, Ma X, Zhao J. 2014. Predicting survival time in noncurative patients with advanced cancer: a prospective study in China. J Palliat Med, 17 (5), pp. 545-552. | Show Abstract | Read more

BACKGROUND: Accurate prediction of prognosis for cancer patients is important for good clinical decision making in therapeutic and care strategies. The application of prognostic tools and indicators could improve prediction accuracy. OBJECTIVE: This study aimed to develop a new prognostic scale to predict survival time of advanced cancer patients in China. METHODS: We prospectively collected items that we anticipated might influence survival time of advanced cancer patients. Participants were recruited from 12 hospitals in Shanghai, China. We collected data including demographic information, clinical symptoms and signs, and biochemical test results. Log-rank tests, Cox regression, and linear regression were performed to develop a prognostic scale. RESULTS: Three hundred twenty patients with advanced cancer were recruited. Fourteen prognostic factors were included in the prognostic scale: Karnofsky Performance Scale (KPS) score, pain, ascites, hydrothorax, edema, delirium, cachexia, white blood cell (WBC) count, hemoglobin, sodium, total bilirubin, direct bilirubin, aspartate aminotransferase (AST), and alkaline phosphatase (ALP) values. The score was calculated by summing the partial scores, ranging from 0 to 30. When using the cutoff points of 7-day, 30-day, 90-day, and 180-day survival time, the scores were calculated as 12, 10, 8, and 6, respectively. CONCLUSIONS: We propose a new prognostic scale including KPS, pain, ascites, hydrothorax, edema, delirium, cachexia, WBC count, hemoglobin, sodium, total bilirubin, direct bilirubin, AST, and ALP values, which may help guide physicians in predicting the likely survival time of cancer patients more accurately. More studies are needed to validate this scale in the future.

Spathis A, Fife K, Blackhall F, Dutton S, Bahadori R, Wharton R, O'Brien M, Stone P, Benepal T, Bates N, Wee B. 2014. Modafinil for the treatment of fatigue in lung cancer: results of a placebo-controlled, double-blind, randomized trial. J Clin Oncol, 32 (18), pp. 1882-1888. | Show Abstract | Read more

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.

Minton O, Wee B, Stone P. 2014. Cancer-related fatigue: An updated systematic review of its management European Journal of Palliative Care, 21 (2), pp. 58-60.

Wanat M, Watson E, Boulton M, Wee B. 2014. Experiences of bowel cancer patients at time of recurrence: A qualitative longitudinal study PSYCHO-ONCOLOGY, 23 pp. 15-15.

Dale T, Wee B. 2014. Provision of specialist palliative care support to patients and carers by telephone. BMJ Support Palliat Care, 4 Suppl 1 (Suppl 1), pp. A61. | Show Abstract | Read more

The community team at Sobell House needed to find ways of managing increasing numbers of referrals. It was felt that one person exclusively undertaking telephone support would free more time for others to visit patients with the greatest need at home. The idea was viewed by some with scepticism -"palliative care by phone? How does that work then?". In December 2009 an advanced nurse practitioner was appointed on a six month trial.

Hedges C, Wee B. 2014. Evaluating a professional development programme. BMJ Support Palliat Care, 4 Suppl 1 (Suppl 1), pp. A76. | Show Abstract | Read more

This project used the Kirkpatrick™ model of learning to help evaluate a Senior Nurses' Professional Development Programme (PDP). It acknowledges that the educational impact on practice, both directly and indirectly, is difficult to measure and is in need of development. In light of this, we aimed to use the Kirkpatrick learning framework to consider a more comprehensive evaluation.

Wanat M, Watson E, Boulton M, Wee B. 2013. "It is Not That Easy to Switch Off to it - The Second Time Round": Experiences of Patients With a Recurrent Bowel Cancer and Their Partners PSYCHO-ONCOLOGY, 22 pp. 316-316.

Wiffen PJ, Wee B, Moore RA. 2013. Oral morphine for cancer pain. Cochrane Database Syst Rev, 7 (7), pp. CD003868. | Show Abstract | Read more

BACKGROUND: This is the second updated version of a Cochrane review first published in Issue 4, 2003 of The Cochrane Library and first updated in 2007. Morphine has been used for many years to relieve pain. Oral morphine in either immediate release or modified release form remains the analgesic of choice for moderate or severe cancer pain. OBJECTIVES: To determine the efficacy of oral morphine in relieving cancer pain, and assess the incidence and severity of adverse effects. SEARCH METHODS: We searched the following databases: Cochrane Pain, Palliative and Supportive Care Group Trials Register (June 2013); Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2013, Issue 5, May); MEDLINE (1966 to June 2013); and EMBASE (1974 to June 2013). SELECTION CRITERIA: Published randomised controlled trials (RCTs) using placebo or active comparators reporting on the analgesic effect of oral morphine in adults and children with cancer pain. Trials with fewer than ten participants were excluded. DATA COLLECTION AND ANALYSIS: One review author extracted data, which were checked by another review author. There were insufficient comparable data for meta-analysis to be undertaken or to produce numbers needed to treat (NNTs) for the analgesic effect. We extracted any available data on the number or proportion of participants with 'no worse than mild pain' or treatment success (very satisfied, or very good or excellent on patient global impression scales). MAIN RESULTS: Ten new studies (638 participants) were identified for this update, bringing the total of included studies to 62, with 4241 participants. Thirty-six studies used a cross-over design ranging from one to 15 days, with the greatest number (11) for seven days for each arm of the trial.Fifteen studies compared oral morphine modified release (Mm/r) preparations with morphine immediate release (MIR). Fourteen studies compared Mm/r in different strengths; six of these included 24-hour modified release products. Fifteen studies compared Mm/r with other opioids. Six studies compared MIR with other opioids. Two studies compared oral Mm/r with rectal Mm/r. Three studies compared MIR with MIR by a different route of administration. Two studies compared Mm/r with Mm/r at different times and two compared MIR with MIR given at a different time. One study was found comparing each of the following: Mm/r tablet with Mm/r suspension; Mm/r with non-opioids; MIR with non-opioids; and oral morphine with epidural morphine.In this update a standard of 'no worse than mild pain' was set equivalent to a score of 30/100 mm or less on a visual analogue pain intensity scale (VAS), or the equivalent in other pain scales. Eighteen studies achieved this level of pain relief on average, and no study reported that good levels of pain relief were not attained. Where results were reported for individual participants in 17 studies, 'no worse than mild pain' was achieved by 96% of participants (362/377), and an outcome equivalent to treatment success in 63% (400/638).Morphine is an effective analgesic for cancer pain. Pain relief did not differ between Mm/r and MIR. Modified release versions of morphine were effective for 12- or 24-hour dosing depending on the formulation. Daily doses in studies ranged from 25 mg to 2000 mg with an average of between 100 mg and 250 mg. Dose titration was undertaken with both instant release and modified release products. A small number of participants did not achieve adequate analgesia with morphine. Adverse effects were common and approximately 6% of participants discontinued treatment because of intolerable adverse effects. AUTHORS' CONCLUSIONS: The effectiveness of oral morphine has stood the test of time, but the randomised trial literature for morphine is small given the importance of this medicine. Most trials recruited fewer than 100 participants and did not provide appropriate data for meta-analysis. Only a few reported how many people had good pain relief, but where it was reported, over 90% had no worse than mild pain within a reasonably short time period. The review demonstrates the wide dose range of morphine used in studies, and that a small percentage of participants are unable to tolerate oral morphine. The review also shows the wide range of study designs, and inconsistency in cross-over designs. Trial design was frequently based on titration of morphine or comparator to achieve adequate analgesia, then crossing participants over in cross-over design studies. It was not clear if these trials are sufficiently powered to detect any clinical differences between formulations or comparator drugs. New studies added to the review reinforce the view that it is possible to use modified release morphine to titrate to analgesic effect. There is qualitative evidence that oral morphine has much the same efficacy as other available opioids.

Fife K, Spathis A, Dutton SJ, Blackhall FH, Bahadori R, Wharton R, O'Brien M, Stone P, Benepal T, Wee B. 2013. A multicenter, randomized, double-blinded, placebo-controlled trial of modafinil for lung cancer-related fatigue: Dose response and patient satisfaction data. JOURNAL OF CLINICAL ONCOLOGY, 31 (15),

Wee B. 2013. Models of delivering palliative and end-of-life care in the UK. Curr Opin Support Palliat Care, 7 (2), pp. 195-200. | Show Abstract | Read more

PURPOSE OF REVIEW: The development of palliative and end-of-life care in the UK has been shaped by history and circumstances within and outside palliative care itself. The main focus of this review is to describe adult palliative care services in England, although much of the historical developments apply across the whole of the UK, and some of the later developments affect children's services as well. RECENT FINDINGS: From the pioneering days of Cicely Saunders, many landmark events have explicitly, or inadvertently, influenced the development of palliative and end-of-life care services. In the UK, it is generally recognized that there is a difference between generalist and specialist palliative care. Funding models, key reports, national strategies, and initiatives in education and training have all contributed to the journey that this specialty has undergone in this country. SUMMARY: Although there is comprehensive coverage of palliative care obtainable across the UK and good access to medication and equipment, there remains a lot of inequity to challenge and address, including those relating to geography, diagnosis, age and ethnicity.

Brooks D, Wee B. 2013. The Liverpool Care Pathway: what is the furore in the press about? Br J Hosp Med (Lond), 74 (1), pp. 4-5. | Read more

Moretto EN, Wee B, Wiffen PJ, Murchison AG. 2013. Interventions for treating persistent and intractable hiccups in adults. Cochrane Database Syst Rev, 1 (1), pp. CD008768. | Show Abstract | Read more

BACKGROUND: Persistent and intractable hiccups (typically defined as lasting for more than 48 hours and one month respectively) can be of serious detriment to a patient's quality of life, although they are relatively uncommon. A wide range of pharmacological and non-pharmacological interventions have been used for the treatment of persistent and intractable hiccups. However, there is little evidence as to which interventions are effective or harmful. OBJECTIVES: The objective of this review was to evaluate the effectiveness of pharmacological and non-pharmacological interventions used in the treatment of persistent and intractable hiccups of any aetiology in adults. SEARCH METHODS: Studies were identified from the following databases: CENTRAL, CDSR, DARE, MEDLINE, EMBASE, CINAHL, PsychINFO and SIGLE (last search March 2012). The search strategy for all the databases searched was based on the MEDLINE search strategy presented in Appendix 1. No additional handsearching of journals was undertaken. Investigators who are known to be carrying out research in this area were contacted for unpublished data or knowledge of the grey literature. SELECTION CRITERIA: Studies eligible for inclusion in this review were randomised controlled trials (RCTs) or controlled clinical trials (CCTs). INCLUSION CRITERIA: adults (over 18 years old) diagnosed with persistent or intractable hiccups (hiccups lasting more than 48 hours), treated with any pharmacological or non-pharmacological intervention. EXCLUSION CRITERIA: less than ten participants; no assessment of change in hiccup frequency or intensity in outcome measures. DATA COLLECTION AND ANALYSIS: Two independent review authors assessed each abstract and title for relevance. Disagreement on eligibility was resolved by discussion. Where no abstract was available the full paper was obtained and assessed. We obtained full copies of the studies which met the inclusion criteria for further assessment. Two review authors independently collected data from each appropriate study and entered them into the software Review Manager 5. Two independent review authors assessed the risk of bias using the RevMan 5 'Risk of bias' table following guidance from the Cochrane Handbook of Systematic Reviews of Interventions (Higgins 2009). MAIN RESULTS: A total of four studies (305 participants) met the inclusion criteria. All of these studies sought to determine the effectiveness of different acupuncture techniques in the treatment of persistent and intractable hiccups. All four studies had a high risk of bias, did not compare the intervention with placebo, and failed to report side effects or adverse events for either the treatment or control groups. Due to methodological differences we were unable to perform a meta-analysis of the results. No studies investigating pharmacological interventions for persistent and intractable hiccups met the inclusion criteria. AUTHORS' CONCLUSIONS: There is insufficient evidence to guide the treatment of persistent or intractable hiccups with either pharmacological or non-pharmacological interventions.The paucity of high quality studies indicate a need for randomised placebo-controlled trials of both pharmacological and non-pharmacological treatments. As the symptom is relatively rare, trials would need to be multi-centred and possibly multi-national.

Wee B. 2012. Can e-learning be used to teach end-of-life care? BMJ Support Palliat Care, 2 (4), pp. 292-293. | Read more

Wee B, Browning J, Adams A, Benson D, Howard P, Klepping G, Molassiotis A, Taylor D. 2012. Management of chronic cough in patients receiving palliative care: review of evidence and recommendations by a task group of the Association for Palliative Medicine of Great Britain and Ireland. Palliat Med, 26 (6), pp. 780-787. | Show Abstract | Read more

BACKGROUND: Chronic cough is a disruptive and exhausting symptom, reported as very distressing in a quarter of those in their last year of life. Existing guidelines for management of chronic cough primarily deal with the commonest benign causes of cough: asthma; eosinophilic bronchitis; gastro-oesophageal reflux disease; rhinosinusitis. AIM/DESIGN: to examine what literature evidence exists and formulate recommendations for managing chronic cough in patients with advanced, progressive, life-limiting illnesses. DATA SOURCES: Electronic databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, Google Scholar); hand-search; grey literature. RESULTS: Of 11 initially eligible studies, 5 provided evidence at level 2 or better. The small size of these studies, heterogeneity of study population and diversity of interventions and outcome measures used meant that comparison across studies and compilation of guidelines based on high-quality evidence was not possible. Pragmatic recommendations based on available evidence were formulated, drawing on the included studies and, in addition, extrapolating from two other well-designed studies involving patients with chronic cough. They also took into consideration convenience, toxicity and minimizing burden and harm of intervention, as well as considering the potential for disease-directed treatment and the possibility of pharmacological and co-existing benign causes of chronic cough. CONCLUSIONS: These recommendations (Grade D) include simple linctus, therapeutic trial of sodium cromoglycate and then prescription of an opioid or opioid derivative (dextromethorphan, morphine or codeine). Further research is clearly and urgently required in this area for more effective approaches to managing cough, tested in trials that have sufficient size, power and validity.

Wee B, Hillier R. 2011. Pain control Medicine, 39 (11), pp. 639-644. | Show Abstract | Read more

Despite medical advances over the past 20 years, pain remains a problem in 60% of patients with advanced cancer and end-of-life care. In this article, we focus on how to assess and diagnose pain, and explore basic pharmacological and other pain-relieving interventions. Important issues highlighted are the need for skilled assessment and timely decisions in getting to grips with pain control quickly. Strategies include the use of the WHO analgesic ladder, effective management of side effects and how to decide which route of drug administration is appropriate in different situations. We discuss pain that is unresponsive to opioids and outline the role of non-pharmacological methods. Systematic assessment, rapid diagnosis and early effective treatment are crucial. Radiotherapy, chemotherapy and neuro-anaesthetic interventions have a role, even in patients with advanced disease. But early referral to specialist palliative care or pain teams is essential for difficult pains or when pain is not quickly controlled. There is almost always something that can be done to improve the patient's experience. © 2011 Elsevier Ltd. All rights reserved.

Shepperd S, Wee B, Straus SE. 2011. Hospital at home: home-based end of life care. Cochrane Database Syst Rev, (7), pp. CD009231. | Show Abstract | Read more

BACKGROUND: The policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and patients with a terminal illness would prefer to receive end of life care at home. OBJECTIVES: To determine if providing home-based end of life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs and care givers compared with inpatient hospital or hospice care. SEARCH STRATEGY: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library) to October 2009, Ovid MEDLINE(R) 1950 to March 2011, EMBASE 1980 to October 2009, CINAHL 1982 to October 2009 and EconLit to October 2009. We checked the reference lists of articles identified for potentially relevant articles. SELECTION CRITERIA: Randomised controlled trials, interrupted time series or controlled before and after studies evaluating the effectiveness of home-based end of life care with inpatient hospital or hospice care for people aged 18 years and older. DATA COLLECTION AND ANALYSIS: Two authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible we presented the data in narrative summary tables. MAIN RESULTS: We included four trials in this review. Those receiving home-based end of life care were statistically significantly more likely to die at home compared with those receiving usual care (RR 1.33, 95% CI 1.14 to 1.55, P = 0.0002; Chi (2) = 1.72, df = 2, P = 0.42, I(2) = 0% (three trials; N=652)). We detected no statistically significant differences for functional status (measured by the Barthel Index), psychological well-being or cognitive status, between patients receiving home-based end of life care compared with those receiving standard care (which included inpatient care). Admission to hospital while receiving home-based end of life care varied between trials and this was reflected by high levels of statistically significant heterogeneity in this analysis. There was some evidence of increased patient satisfaction with home-based end of life care, and little evidence of the impact this form of care has on care givers. AUTHORS' CONCLUSIONS: The evidence included in this review supports the use of end of life home-care programmes for increasing the number of patients who will die at home, although the numbers of patients being admitted to hospital while receiving end of life care should be monitored. Future research should also systematically assess the impact of end of life home care on care givers.

Wee B, Adams A, Eva G. 2010. Palliative and end-of-life care for people with stroke. Curr Opin Support Palliat Care, 4 (4), pp. 229-232. | Show Abstract | Read more

PURPOSE OF REVIEW: Stroke is a devastating illness. Significant progress has been made in the prevention, acute treatment and rehabilitation of stroke. Yet many people still die from stroke. The role of palliative and end-of-life care for stroke has received considerably less attention. This review presents an overview of the current understanding of palliative and end-of-life care for people with stroke. RECENT FINDINGS: The impact of stroke is wide-ranging and long lasting. It affects both patients and those who become their caregivers. Those who are dying from stroke experience a similar symptom profile to many other dying people. Palliative care services involved in care of stroke patients are more frequently involved in issues related to communication and difficult decisions related to food and fluids. Caregivers have significant needs, particularly around information provision, communication and involvement in, or consultation about, decision-making. Those who survive the immediate aftermath of a stroke are often left with significant psychological and social limitations in addition to physical disability. SUMMARY: It is clear that patients with stroke have palliative care needs. Palliative and end-of-life care services can contribute to the care of people with stroke, and their families, but the way in which stroke and palliative care services should interlink remains unclear.

Eva G, Wee B. 2010. Rehabilitation in end-of-life management. Curr Opin Support Palliat Care, 4 (3), pp. 158-162. | Show Abstract | Read more

PURPOSE OF REVIEW: Loss of ability to manage daily activities is source of significant distress for palliative patients. In the context of end-of-life care, rehabilitation contributes to patients' sense of autonomy, self-worth, and social participation. The present article provides an overview of recent advances in rehabilitation in end-of-life management, drawing on papers published during 2009. RECENT FINDINGS: Palliative patients have rehabilitation needs including difficulties with activities of daily living, disruption to usual routines and roles, and anxieties about being a burden to others. These needs are not adequately identified, leading to patients receiving less than optimal help in living with disability. Research shows that rehabilitation interventions such as exercise programmes have beneficial effects on fatigue and quality of life. In delivering rehabilitation, staff attitudes are important and should support patients' views of themselves as worthwhile, resourceful individuals. SUMMARY: Adequate screening procedures are necessary to identify functional difficulties so that appropriate help might be provided. There is now a growing body of work on the therapeutic benefits of exercise. There is a need for further experimental studies with larger samples to demonstrate effectiveness of interventions, as well as for qualitative studies examining the mechanisms of rehabilitation.

Wee B, Adams A, Thompson K, Percival F, Burslem K, Jobanputra M. 2010. How much does it cost a specialist palliative care unit to manage constipation in patients receiving opioid therapy? J Pain Symptom Manage, 39 (4), pp. 644-654. | Show Abstract | Read more

The burden of constipation from the patient's 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.

Gibbins J, McCoubrie R, Maher J, Wee B, Forbes K. 2010. Recognizing that it is part and parcel of what they do: teaching palliative care to medical students in the UK. Palliat Med, 24 (3), pp. 299-305. | Show Abstract | Read more

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.

Lingjun Z, Jing C, Jian L, Wee B, Jijun Z. 2009. Prediction of survival time in advanced cancer: a prognostic scale for Chinese patients. J Pain Symptom Manage, 38 (4), pp. 578-586. | Show Abstract | Read more

This study reports the development of a simple Chinese Prognostic Scale (ChPS) for predicting survival in advanced cancer patients. Data relating to 1,019 advanced cancer patients referred to a palliative home care service were retrospectively analyzed. The records were divided into two sets using stratified random sampling: 80% as a "training set" for developing the scale and 20% as a "testing set" for validating it. Demographic data, symptoms/signs, Karnofsky Performance Status (KPS), quality of life (QOL), and survival time were statistically analyzed to create the scale. In the training set, a total of 10 prognostic factors were determined: weight loss, nausea, dysphagia, dyspnea, edema, cachexia, dehydration, gender, KPS, and QOL. The ChPS score was calculated for each case by summing the partial scores of prognostic factors, ranging from 0 (no altered variables) to 124 (maximal altered variables). The score for a cutoff point of three months' survival was 28 (95% confidence interval: 26.6, 28.9). When scores were more than 28, survival appeared to be usually less than three months. The accuracy rate was 69.4% in the training set and 65.4% in the testing set. In conclusion, it is possible with this prognostic scale to guide physicians in predicting more accurately the likely survival time of Chinese cancer patients, and to help policy makers in establishing appropriate referral for hospice care.

Eva G, Paley J, Miller M, Wee B. 2009. Patients' constructions of disability in metastatic spinal cord compression. Palliat Med, 23 (2), pp. 132-140. | Show Abstract | Read more

Metastatic spinal cord compression (MSCC) is characterised by poor prognosis and serious physical disability. Patients have complex rehabilitation needs, but the evidence on rehabilitation is sparse. This study aimed to ascertain the constructions placed upon disability by patients with MSCC. The method consisted of a series of nine process-tracing, longitudinal case studies, involving 58 interviews with 9 patients, 6 carers and 29 staff in one National Health Service region. A context-mechanism-outcome configuration was adopted as a conceptual basis for data collection, together with a constant comparative method of data analysis. Patients' orientation to disability incorporated two apparently inconsistent attitudes. Patients acknowledged that their situation had changed and that their future plans would need to accommodate altered circumstances. However, they also resisted the idea of themselves as disabled, wanting to retain an image of themselves as resourceful and resilient. Patients used a number of strategies to reconcile the tension between these two positions. The illusions incorporated into the 'failure to acknowledge' pole of this orientation are self-protective and, like other positive illusions, have psychological benefits. Providing effective and acceptable support to patients living with disability relies on professional responses that are able to sustain patients' sense of their own competence.

Hadley G, Derry S, Moore RA, Wee B. 2009. Can observational studies provide a realistic alternative to randomized controlled trials in palliative care? J Pain Palliat Care Pharmacother, 23 (2), pp. 106-113. | Show Abstract | Read more

Evidence-based medicine demands 'gold standard' randomized controlled trials (RCTs). If strict criteria of quality, validity, and size are met, observational studies give the same result. Given the dearth of RCTs in palliative care, our aim was to identify good observational studies using PubMed searches and e-mail letters to experts in palliative care. The prior intention was provide the most comprehensive description possible to date of observational studies in palliative care, rather than to perform any statistical analyses. Three hundred and forty abstracts of study reports were identified, of which 27% (91) included > or = 200 subjects and 8% (27) > or = 1000 subjects. In reports with > or = 200 subjects, 51% included only cancer patients, and 42% included heterogeneous 'palliative care' patients. Prospective and retrospective studies accounted for 38% and 32% of all reports with > or = 200 subjects. In reports with > or = 1000 subjects, 59% were retrospective and 19% prospective. Patients had some input in 26% of studies with > or = 200 subjects, and 15% with > or = 1000 subjects. Only 12 prospective reports had one specific intervention. We found that palliative care is deficient not only in RCTs, but also good quality observational studies. Those that exist are extremely heterogeneous in subject, design, outcome reporting, and intervention.

Wee B, Davies S, Holt C. 2008. Involving lay caregivers in medical education. Med Educ, 42 (11), pp. 1129. | Read more

Paes P, Wee B. 2008. A Delphi study to develop the Association for Palliative Medicine consensus syllabus for undergraduate palliative medicine in Great Britain and Ireland. Palliat Med, 22 (4), pp. 360-364. | Show Abstract | Read more

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.

Wee B. 2008. Chronic cough. Curr Opin Support Palliat Care, 2 (2), pp. 105-109. | Show Abstract | Read more

PURPOSE OF REVIEW: Chronic cough is common and distressing, especially against the background of life-threatening illness. It is a symptom that has received scant attention, often eclipsed by pain, breathlessness, nausea and vomiting. RECENT FINDINGS: This paper reviews the recent literature in cough research: its mechanism, assessment and management. There is so little research from supportive and palliative care that much of our knowledge is extrapolated from research elsewhere. Objective measurement of cough has been facilitated by advances in measuring devices, while subjective assessment tools including cough-specific quality of life questionnaires are now available. These are practical, simple to use and can be incorporated into daily practice. A few drugs have come in and out of favour but there has been no solid advance in therapeutic options in over a decade. SUMMARY: The availability of simple assessment tools places the imperative on clinicians to be more systematic in assessment of cough and its interventions. The mainstay of oral therapy for symptom control remains dextromethorphan, codeine and morphine. The potential for research is huge: from basic scientific understanding to clinical trials of innovative therapies.

Wee B, Coleman P, Hillier R, Holgate S. 2008. Death rattle: its impact on staff and volunteers in palliative care. Palliat Med, 22 (2), pp. 173-176. | Show Abstract | Read more

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.

Wee B, Hadley G, Derry S. 2008. How useful are systematic reviews for informing palliative care practice? Survey of 25 Cochrane systematic reviews. BMC Palliat Care, 7 (1), pp. 13. | Show Abstract | Read more

BACKGROUND: In 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. METHODS: Published 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. RESULTS: 25 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. CONCLUSION: Cochrane 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.

Wee B, Hillier R. 2008. Interventions for noisy breathing in patients near to death. Cochrane Database Syst Rev, (1), pp. CD005177. | Show Abstract | Read more

BACKGROUND: Noisy breathing (death rattle) occurs in 23 to 92% of people who are dying. The cause of death rattle remains unproven but is presumed to be due to an accumulation of secretions in the airways. It is therefore managed physically (repositioning and clearing the upper airways of fluid with a mechanical sucker) or pharmacologically (with anticholinergic drugs). OBJECTIVES: To describe and assess the evidence for the effectiveness of interventions used to treat death rattle in patients close to death. SEARCH STRATEGY: Randomised controlled trials (RCTs), before and after studies and interrupted time series (ITS) studies in adults and children with death rattle were sought by MEDLINE (1966 to 2007), EMBASE (1980 to 2007), CINAHL (1980 to 2007), the Cochrane Pain, Palliative and Supportive Care Trials Register and the Cochrane Central Register of Controlled Trials. In addition, the reference lists of all relevant trials and reports were checked and investigators who are known to be researching this area were contacted for unpublished data or knowledge of the grey literature. SELECTION CRITERIA: RCTs, controlled before and after studies and ITS reporting the outcome of pharmacological and non-pharmacological interventions for treating death rattle. DATA COLLECTION AND ANALYSIS: Data was extracted by two independent review authors and trials were quality scored. There was insufficient data to carry out an analysis. MAIN RESULTS: Thirty studies were identified, of which only one study met the inclusion criteria. This small study was a randomised placebo-controlled trial of the use of hyoscine hydrobromide in patients with death rattle. Hyoscine hydrobromide tended to reduce death rattle compared to placebo but this was not significant. A larger randomised study, comparing atropine, hyoscine butylbromide and scopolamine, is in progress. AUTHORS' CONCLUSIONS: There is currently no evidence to show that any intervention, be it pharmacological or non-pharmacological, is superior to placebo in the treatment of death rattle. We acknowledge that in the face of heightened emotions when death is imminent, it is difficult for staff not to intervene. It is therefore likely that the current therapeutic options will continue to be used. However, patients need to be closely monitored for lack of therapeutic benefit and adverse effects while relatives need time, explanation and reassurance to relieve their fears and concerns. There is a need for more well-designed multi-centre studies with objective outcome measures and the ability to recruit sufficient numbers.

Johnson M, Boyd K, Kendall M, Wee B, Science Committee of the APM and Hull-York Medical School. 2008. A catalyst for research in supportive and palliative care for patients with advanced heart failure. A meeting convened by the Science Committee of the APM and Hull-York Medical School. Palliat Med, 22 (3), pp. 291-292. | Read more

Wee B, Hillier R. 2008. Pain control Medicine, 36 (2), pp. 67-71. | Show Abstract | Read more

Despite medical advances over the past 20 years, pain remains a problem in 60% of patients with advanced cancer and other fatal diseases. In this article, we focus on how to assess and diagnose pain, and explore basic pharmacological and other pain-relieving interventions. Important issues highlighted are the need for skilled assessment and timely decisions in getting to grips with pain control quickly. Strategies include the use of the WHO analgesic ladder, effective management of side effects and how to decide which route of drug administration is appropriate in different situations. Alternative treatments for pain, partially or unresponsive to opioids, are outlined and the role of non-pharmacological methods are discussed. Systematic assessment, rapid diagnosis and early effective treatment are crucial. Radiotherapy, chemotherapy and neuroanaesthetic interventions have a role, even in patients with advanced disease. Early referral to specialist palliative care or pain teams is essential for difficult pains or when pain is not quickly controlled. Compassion alone is not enough; competence and effective communication must come first. There is almost always something that can be done to improve the patient's experience. © 2007 Elsevier Ltd. All rights reserved.

Wee BL, Coleman PG, Hillier R, Holgate SH. 2006. The sound of death rattle I: are relatives distressed by hearing this sound? Palliat Med, 20 (3), pp. 171-175. | Show Abstract | Read more

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.

Wee BL, Coleman PG, Hillier R, Holgate SH. 2006. The sound of death rattle II: how do relatives interpret the sound? Palliat Med, 20 (3), pp. 177-181. | Show Abstract | Read more

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.

Wilcock A, Thomas J, Frisby J, Webster M, Keeley V, Finn G, Fossey K, Wee B, Beale J, Lennard MS. 2005. Potential for drug interactions involving cytochrome P450 in patients attending palliative day care centres: a multicentre audit. Br J Clin Pharmacol, 60 (3), pp. 326-329. | Show Abstract | Read more

AIM: To determine the potential for drug interactions involving cytochrome P450 (CYP) in patients receiving palliative day care. METHODS: Drugs used by patients attending four specialist palliative day care centres were reviewed to identify combinations that could result in a pharmacokinetic interaction via any of the five main human forms of CYP. RESULTS: Of 160 patients, 145 (91%) were prescribed at least one drug that was a substrate, inhibitor or inducer of one of the five main CYP isoforms. Twenty-four drug combinations, involving 34 patients, could have given rise to a clinically important interaction. CONCLUSIONS: Prescribers should be aware that in this group of patients, one in five are at risk of a clinically important CYP-mediated drug interaction.

Wilcock A, Thomas J, Frisby J, Webster M, Keeley V, Finn G, Fossey K, Wee B, Beale J, Lennard MS. 2005. Potential for drug interactions involving cytochrome P450 in patients attending palliative care day centres: a multicentre survey BRITISH JOURNAL OF CLINICAL PHARMACOLOGY, 59 (5), pp. 638-638.

Wee B. 2014. One Chance to Get it Right: A new vision for the care of the dying European Journal of Palliative Care, 21 (5), pp. 213.

Spathis A, Fife K, Blackhall F, Dutton S, Bahadori R, Wharton R, O'Brien M, Stone P, Benepal T, Bates N, Wee B. 2014. Modafinil for the treatment of fatigue in lung cancer: results of a placebo-controlled, double-blind, randomized trial. J Clin Oncol, 32 (18), pp. 1882-1888. | Show Abstract | Read more

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.

Wee B. 2013. Models of delivering palliative and end-of-life care in the UK. Curr Opin Support Palliat Care, 7 (2), pp. 195-200. | Show Abstract | Read more

PURPOSE OF REVIEW: The development of palliative and end-of-life care in the UK has been shaped by history and circumstances within and outside palliative care itself. The main focus of this review is to describe adult palliative care services in England, although much of the historical developments apply across the whole of the UK, and some of the later developments affect children's services as well. RECENT FINDINGS: From the pioneering days of Cicely Saunders, many landmark events have explicitly, or inadvertently, influenced the development of palliative and end-of-life care services. In the UK, it is generally recognized that there is a difference between generalist and specialist palliative care. Funding models, key reports, national strategies, and initiatives in education and training have all contributed to the journey that this specialty has undergone in this country. SUMMARY: Although there is comprehensive coverage of palliative care obtainable across the UK and good access to medication and equipment, there remains a lot of inequity to challenge and address, including those relating to geography, diagnosis, age and ethnicity.

Wee B, Browning J, Adams A, Benson D, Howard P, Klepping G, Molassiotis A, Taylor D. 2012. Management of chronic cough in patients receiving palliative care: review of evidence and recommendations by a task group of the Association for Palliative Medicine of Great Britain and Ireland. Palliat Med, 26 (6), pp. 780-787. | Show Abstract | Read more

BACKGROUND: Chronic cough is a disruptive and exhausting symptom, reported as very distressing in a quarter of those in their last year of life. Existing guidelines for management of chronic cough primarily deal with the commonest benign causes of cough: asthma; eosinophilic bronchitis; gastro-oesophageal reflux disease; rhinosinusitis. AIM/DESIGN: to examine what literature evidence exists and formulate recommendations for managing chronic cough in patients with advanced, progressive, life-limiting illnesses. DATA SOURCES: Electronic databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, Google Scholar); hand-search; grey literature. RESULTS: Of 11 initially eligible studies, 5 provided evidence at level 2 or better. The small size of these studies, heterogeneity of study population and diversity of interventions and outcome measures used meant that comparison across studies and compilation of guidelines based on high-quality evidence was not possible. Pragmatic recommendations based on available evidence were formulated, drawing on the included studies and, in addition, extrapolating from two other well-designed studies involving patients with chronic cough. They also took into consideration convenience, toxicity and minimizing burden and harm of intervention, as well as considering the potential for disease-directed treatment and the possibility of pharmacological and co-existing benign causes of chronic cough. CONCLUSIONS: These recommendations (Grade D) include simple linctus, therapeutic trial of sodium cromoglycate and then prescription of an opioid or opioid derivative (dextromethorphan, morphine or codeine). Further research is clearly and urgently required in this area for more effective approaches to managing cough, tested in trials that have sufficient size, power and validity.

Lingjun Z, Jing C, Jian L, Wee B, Jijun Z. 2009. Prediction of survival time in advanced cancer: a prognostic scale for Chinese patients. J Pain Symptom Manage, 38 (4), pp. 578-586. | Show Abstract | Read more

This study reports the development of a simple Chinese Prognostic Scale (ChPS) for predicting survival in advanced cancer patients. Data relating to 1,019 advanced cancer patients referred to a palliative home care service were retrospectively analyzed. The records were divided into two sets using stratified random sampling: 80% as a "training set" for developing the scale and 20% as a "testing set" for validating it. Demographic data, symptoms/signs, Karnofsky Performance Status (KPS), quality of life (QOL), and survival time were statistically analyzed to create the scale. In the training set, a total of 10 prognostic factors were determined: weight loss, nausea, dysphagia, dyspnea, edema, cachexia, dehydration, gender, KPS, and QOL. The ChPS score was calculated for each case by summing the partial scores of prognostic factors, ranging from 0 (no altered variables) to 124 (maximal altered variables). The score for a cutoff point of three months' survival was 28 (95% confidence interval: 26.6, 28.9). When scores were more than 28, survival appeared to be usually less than three months. The accuracy rate was 69.4% in the training set and 65.4% in the testing set. In conclusion, it is possible with this prognostic scale to guide physicians in predicting more accurately the likely survival time of Chinese cancer patients, and to help policy makers in establishing appropriate referral for hospice care.

Eva G, Paley J, Miller M, Wee B. 2009. Patients' constructions of disability in metastatic spinal cord compression. Palliat Med, 23 (2), pp. 132-140. | Show Abstract | Read more

Metastatic spinal cord compression (MSCC) is characterised by poor prognosis and serious physical disability. Patients have complex rehabilitation needs, but the evidence on rehabilitation is sparse. This study aimed to ascertain the constructions placed upon disability by patients with MSCC. The method consisted of a series of nine process-tracing, longitudinal case studies, involving 58 interviews with 9 patients, 6 carers and 29 staff in one National Health Service region. A context-mechanism-outcome configuration was adopted as a conceptual basis for data collection, together with a constant comparative method of data analysis. Patients' orientation to disability incorporated two apparently inconsistent attitudes. Patients acknowledged that their situation had changed and that their future plans would need to accommodate altered circumstances. However, they also resisted the idea of themselves as disabled, wanting to retain an image of themselves as resourceful and resilient. Patients used a number of strategies to reconcile the tension between these two positions. The illusions incorporated into the 'failure to acknowledge' pole of this orientation are self-protective and, like other positive illusions, have psychological benefits. Providing effective and acceptable support to patients living with disability relies on professional responses that are able to sustain patients' sense of their own competence.

Hadley G, Derry S, Moore RA, Wee B. 2009. Can observational studies provide a realistic alternative to randomized controlled trials in palliative care? J Pain Palliat Care Pharmacother, 23 (2), pp. 106-113. | Show Abstract | Read more

Evidence-based medicine demands 'gold standard' randomized controlled trials (RCTs). If strict criteria of quality, validity, and size are met, observational studies give the same result. Given the dearth of RCTs in palliative care, our aim was to identify good observational studies using PubMed searches and e-mail letters to experts in palliative care. The prior intention was provide the most comprehensive description possible to date of observational studies in palliative care, rather than to perform any statistical analyses. Three hundred and forty abstracts of study reports were identified, of which 27% (91) included > or = 200 subjects and 8% (27) > or = 1000 subjects. In reports with > or = 200 subjects, 51% included only cancer patients, and 42% included heterogeneous 'palliative care' patients. Prospective and retrospective studies accounted for 38% and 32% of all reports with > or = 200 subjects. In reports with > or = 1000 subjects, 59% were retrospective and 19% prospective. Patients had some input in 26% of studies with > or = 200 subjects, and 15% with > or = 1000 subjects. Only 12 prospective reports had one specific intervention. We found that palliative care is deficient not only in RCTs, but also good quality observational studies. Those that exist are extremely heterogeneous in subject, design, outcome reporting, and intervention.

Wee B, Davies S, Holt C. 2008. Involving lay caregivers in medical education. Med Educ, 42 (11), pp. 1129. | Read more

Paes P, Wee B. 2008. A Delphi study to develop the Association for Palliative Medicine consensus syllabus for undergraduate palliative medicine in Great Britain and Ireland. Palliat Med, 22 (4), pp. 360-364. | Show Abstract | Read more

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.

Wee B, Coleman P, Hillier R, Holgate S. 2008. Death rattle: its impact on staff and volunteers in palliative care. Palliat Med, 22 (2), pp. 173-176. | Show Abstract | Read more

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.

Wee B, Hillier R. 2008. Interventions for noisy breathing in patients near to death. Cochrane Database Syst Rev, (1), pp. CD005177. | Show Abstract | Read more

BACKGROUND: Noisy breathing (death rattle) occurs in 23 to 92% of people who are dying. The cause of death rattle remains unproven but is presumed to be due to an accumulation of secretions in the airways. It is therefore managed physically (repositioning and clearing the upper airways of fluid with a mechanical sucker) or pharmacologically (with anticholinergic drugs). OBJECTIVES: To describe and assess the evidence for the effectiveness of interventions used to treat death rattle in patients close to death. SEARCH STRATEGY: Randomised controlled trials (RCTs), before and after studies and interrupted time series (ITS) studies in adults and children with death rattle were sought by MEDLINE (1966 to 2007), EMBASE (1980 to 2007), CINAHL (1980 to 2007), the Cochrane Pain, Palliative and Supportive Care Trials Register and the Cochrane Central Register of Controlled Trials. In addition, the reference lists of all relevant trials and reports were checked and investigators who are known to be researching this area were contacted for unpublished data or knowledge of the grey literature. SELECTION CRITERIA: RCTs, controlled before and after studies and ITS reporting the outcome of pharmacological and non-pharmacological interventions for treating death rattle. DATA COLLECTION AND ANALYSIS: Data was extracted by two independent review authors and trials were quality scored. There was insufficient data to carry out an analysis. MAIN RESULTS: Thirty studies were identified, of which only one study met the inclusion criteria. This small study was a randomised placebo-controlled trial of the use of hyoscine hydrobromide in patients with death rattle. Hyoscine hydrobromide tended to reduce death rattle compared to placebo but this was not significant. A larger randomised study, comparing atropine, hyoscine butylbromide and scopolamine, is in progress. AUTHORS' CONCLUSIONS: There is currently no evidence to show that any intervention, be it pharmacological or non-pharmacological, is superior to placebo in the treatment of death rattle. We acknowledge that in the face of heightened emotions when death is imminent, it is difficult for staff not to intervene. It is therefore likely that the current therapeutic options will continue to be used. However, patients need to be closely monitored for lack of therapeutic benefit and adverse effects while relatives need time, explanation and reassurance to relieve their fears and concerns. There is a need for more well-designed multi-centre studies with objective outcome measures and the ability to recruit sufficient numbers.

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