Marjolein Gysels

Heterogeneity and changes in preferences for dying at home: a systematic review

BackgroundHome-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression.MethodsWe searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966–2011), EMBASE (1980–2011), psycINFO (1967–2011), CINAHL (1982–2011), six palliative care journals (2006–11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed the percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size.Results210 studies reported preferences of just over 100,000 people from 33 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death–this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested.ConclusionsControlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial

BACKGROUND Breathlessness is a common and distressing symptom, which increases in many diseases as they progress and is difficult to manage. We assessed the effectiveness of early palliative care integrated with respiratory services for patients with advanced disease and refractory breathlessness. METHODS In this single-blind randomised trial, we enrolled consecutive adults with refractory breathlessness and advanced disease from three large teaching hospitals and via general practitioners in South London. We randomly allocated (1:1) patients to receive either a breathlessness support service or usual care. Randomisation was computer generated centrally by the independent Clinical Trials Unit in a 1:1 ratio, by minimisation to balance four potential confounders: cancer versus non-cancer, breathlessness severity, presence of an informal caregiver, and ethnicity. The breathlessness support service was a short-term, single point of access service integrating palliative care, respiratory medicine, physiotherapy, and occupational therapy. Research interviewers were masked as to which patients were in the treatment group. Our primary outcome was patient-reported breathlessness mastery, a quality of life domain in the Chronic Respiratory Disease Questionnaire, at 6 weeks. All analyses were by intention to treat. Survival was a safety endpoint. This trial is registered with ClinicalTrials.gov, number NCT01165034. FINDINGS Between Oct 22, 2010 and Sept 28, 2012, 105 consenting patients were randomly assigned (53 to breathlessness support service and 52 to usual care). 83 of 105 (78%) patients completed the assessment at week 6. Mastery in the breathlessness support service group improved compared with the control (mean difference 0·58, 95% CI 0·01-1·15, p=0·048; effect size 0·44). Sensitivity analysis found similar results. Survival rate from randomisation to 6 months was better in the breathlessness support service group than in the control group (50 of 53 [94%] vs 39 of 52 [75%]) and in overall survival (generalised Wilcoxon 3·90, p=0·048). Survival differences were significant for patients with chronic obstructive pulmonary disease and interstitial lung disease but not cancer. INTERPRETATION The breathlessness support service improved breathlessness mastery. Our findings provide robust evidence to support the early integration of palliative care for patients with diseases other than cancer and breathlessness as well as those with cancer. The improvement in survival requires further investigation. FUNDING UK National Institute for Health Research (NIHR) and Cicely Saunders International.

Communication training for health professionals who care for patients with cancer: a systematic review of effectiveness

BackgroundEffective communication is increasingly recognised as a core clinical skill. However, there is evidence that health and social care professionals still lack basic communication skills.PurposeTo assess the effectiveness of different communication skills training courses for health professionals in cancer care.MethodsWe searched six computerised databases and augmented this with a follow-up of references and grey (unpublished) literature. We included all studies evaluating communication training and assessed methodological quality according to the standard grading system of the Clinical Outcomes Group. Data on author, year, setting, objectives, study design and results were extracted and compared in tabular format.ResultsA total of 47 studies potentially assessing communication training in the area of cancer care were identified. Sixteen papers were included describing 13 interventions. Four were randomised controlled trials (RCTs) (grade I), with samples ranging from 72 to 233 subjects. The others were all grade III. Eleven interventions trained health professionals, two trained medical students. The outcomes measured included communication skills as assessed on audio or video, professionals’ self-report and patient assessment. All the interventions demonstrated modest improvements (effect sizes ranged 0.15–2) and one found deterioration in the outcomes measured.ConclusionCommunication training improves basic communication skills. Positive attitudes and beliefs are needed to maintain skills over time in clinical practice and to effectively handle emotional situations.

Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups

Objective To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care. Design A national consultation and prioritising exercise using a modified form of the nominal group technique. Participants Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Setting Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland. Results 74% of those invited (210/285) participated. The stage of life to which “end of life care” referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Conclusions Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.

Understanding Breathlessness: Cross-Sectional Comparison of Symptom Burden and Palliative Care Needs in Chronic Obstructive Pulmonary Disease and Cancer

BACKGROUND Little is known about symptom burden and palliative care needs of breathless patients with advanced cancer and chronic obstructive pulmonary disease (COPD). OBJECTIVES We aimed to describe and compare symptoms and needs in these two groups in relation to survival. METHODS Cross-sectional study of breathless patients with COPD III/IV or advanced cancer. Data were collected in an interview using the Memorial Symptom Assessment Scale short form (MSAS-SF), the modified Borg Scale, the Hospital Anxiety and Depression Scale, and the Palliative Care Outcome Scale (POS). Follow-up information was collected on survival. RESULTS Forty-nine patients with cancer and 60 patients with COPD were recruited. Both groups had similar demographics and a similar high symptom burden: median number of 14 symptoms; most prevalent symptoms in both groups besides breathlessness were drowsiness, lack of energy, cough; median global symptom distress on MSAS-Global Distress Index MSAS-GDI 1.6 in cancer and 1.4 in COPD. HADS depression scores were higher than HADS anxiety scores. Palliative care needs were also similar in both groups. Median survival was 107 days in patients with cancer and 589 days in patients with COPD. CONCLUSIONS Symptom burden and palliative care needs of breathless patients with severe COPD are considerable and as high as among patients with advanced primary and secondary lung cancer although patients with COPD have a longer survival.

Women who sell sex in a Ugandan trading town: life histories, survival strategies and risk

Little is known about the background of commercial sex workers in Africa. This study investigated how women in a trading town on the trans-Africa highway in southwest Uganda become involved in commercial sex work, which factors contribute to their economic success or lack of success, and what effect life trajectories and economic success have on negotiating power and risk behaviour. Over the course of two years detailed life histories of 34 women were collected through recording open, in-depth interviews, the collection of sexual and income and expenditure diaries, visits to the womens native villages, and participant observation. The women share similar disadvantaged backgrounds and this has played a role in their move into commercial sex. They have divergent experiences, however, in their utilisation of opportunities and in the level of success they achieve. They have developed different life styles and a variety of ways of dealing with sexual relationships. Three groups of women were identified: (1) women who work in the back-street bars, have no capital of their own and are almost entirely dependent on selling sex for their livelihood; (2) waitresses in the bars along the main road who engage in a more institutionalised kind of commercial sex, often mediated by middlemen and (3) the more successful entrepreneurs who earn money from their own bars as well as from commercial sex. The three groups had different risk profiles. Due partly to their financial independence from men, women in the latter group have taken control of sexual relationships and can negotiate good sexual deals for themselves, both financially and in terms of safe sex. The poorer women were more vulnerable and less able to negotiate safer sex. A disadvantaged background and restricted access to economic resources are the major reasons for women gravitating to commercial sex work. Various aspects of personality play a role in utilising income from commercial sex to set up an economic basis that then makes the selling of sex unnecessary. This has implications for interventions, and part of the longer-term solution should lie in improving the economic position of women vis-à-vis men.

Communication training for health professionals who care for patients with cancer: a systematic review of training methods

BackgroundEffective communication is increasingly recognised as a core clinical skill. Many health and social care professionals, however, do not feel adequately trained in communicating and in handling interpersonal issues that arise in the care of patients with cancer.AimThe aim of this paper was to assess the effectiveness of different training methods used in communication training courses for health professionals.MethodWe searched six computerised databases and augmented this with follow-up of references and grey (unpublished) literature. We included all studies evaluating communication training and assessed methodological quality according to the standard grading system of the Clinical Outcomes Group. Data on author, year, setting, objectives, study design and training methods were extracted and compared in tabular format.ResultsA total of 47 studies potentially assessing communication training were identified. Sixteen papers were included evaluating 13 interventions. Four were randomised controlled trials (RCTs) (grade a); the others were grade III. Eleven interventions trained health professionals; two trained medical students. Interventions for training in communication skills were characterised by the variety of communication approaches used and a diversity of methods. They were applied to health professionals with very different roles, served different purposes and evaluated a variety of outcome measures: behavioural assessments, patient outcomes and professionals’ self-report.ConclusionsThe best results are to be expected from a training programme that is carried out over a longer period of time. Learner-centred programmes using several methods combining a didactic component focusing on theoretical knowledge with practical rehearsal and constructive feedback from peers and skilled facilitators proved to be very effective. Small groups encouraged more intensive participation. Training in communication for both medical or nursing students and senior health professionals is advisable.

Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews

BackgroundDespite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field.MethodsThe Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC.ResultsWe integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project.ConclusionsThe MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.

Do religious or spiritual beliefs influence bereavement? A systematic review.

Background: Responses to bereavement may be influenced by characteristics such as age or gender, but also by factors like culture and religion. Aim: A systematic review was undertaken to assess whether spiritual or religious beliefs alter the process of grief and/or bereavement. Methods: Fifteen computerized databases were searched. Thirty-two studies met the inclusion criteria. Evidence was graded according to the standard grading system of the Clinical Outcomes Group and by the SIGNAL score. Results: In total, 5715 persons were examined: 69% women, 87% white, 83% protestant. Ninety-four percent of studies show some positive effects of religious/spiritual beliefs on bereavement, but there was a great heterogeneity regarding included populations and outcome measurements. Conclusion: Available data do not allow for a definite answer on whether religious/spiritual beliefs effectively influence bereavement as most studies suffer from weaknesses in design and methodological flaws. Further research is needed. Recommendations for further research are given. Palliative Medicine 2007; 21: 207—217