This paper was discussed at the Cicely Saunders Institute Journal Club on Wednesday 6th December. We appreciated the opportunity to discuss a well conducted RCT and to see it published even after getting a negative result. We enjoyed discussing this paper and it generated a series of reflections on the methods, in particular regarding the primary outcome.
We positively highlighted the detailed discussion about previous trials regarding early specialist palliative care (SPC) in the introduction, and the clear description of the randomization process as well as the blindness of analysts and the sensitivity analysis. We felt more information about what ‘standard care’ involved for individuals in the control group would have been beneficial.
We discussed extensively the use of patient’s primary need based on the EORTC QLQ-C30 dimensions as primary outcome. We agree with the authors about the importance of addressing the heterogeneity in palliative care patients needs and we value the use of measurements that are important for patients. We wondered if the nature of the outcome chosen required a larger sample size to show a difference between arms. It is clear that some of the dimensions would be easier to modify by a SPC team than others. That makes the positive effect SPC might have had in some dimensions being attenuated in the weighted mean. In addition, SPC might have a different impact according to type of cancer. Including all type of cancer patients increases the variability of the effect, and might require a larger sample size. We wondered if the lack of uniformity of the intervention among the different centres also contributed to lack of significant difference in the primary outcome.
Finally, we valued the discussion of the possible reasons for the lack of effect of the intervention, which need to be taken into account for future trials.
Commentary by Javiera Leniz Martelli and Katherine Bristowe
We selected and discussed this paper at our monthly journal club on 1st November 2017.
The paper generated a lot of discussion and we felt that this was an important concept, especially for clinicians, to think about. The topic of QALYs was unfamiliar to some of us and we found that the authors explained it very clearly in the paper. We were intrigued by the use of an integrative review method and discussed this at length. It may have been helpful to read more explanation of this method and know how it differs from other types of review methods. We also wondered about some of the inclusion/exclusion criteria such as the exclusion of reviews and the decision making process for the theoretical papers included. We enjoyed discussing the themes which emerged from this paper and the wider debate around the most appropriate measures for palliative care populations, particularly in light of the recent paper by Dzingina et al. 2017 (https://www.ncbi.nlm.nih.gov/pubmed/28434392). We feel this paper will be a useful educational resource.
Commentary by Dr. Nilay Hepgul & Dr. Deokhee Yi on behalf of researchers at Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London.
We chose this paper for our monthly Journal Club on 6th September 2017 and some comments from our discussion are below.
This is a useful paper to explore the experiences of clinicians and relatives to determine why hospital deaths predominate in haematological cancers. This paper focused on an important and under-researched topic. We felt that this paper would be improved if the authors could
1) Use Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist.
2) State what methodological orientation underpinned the study? E.g. grounded theory, ethnography, phenomenology.
3) Explain the reasons for the imbalance of sample (45 clinicians vs. 10 relatives) and why patients’ perspectives were not included.
4) Elaborate the views of ‘co-dependency’ in more detail.
5) Provide more in-depth cross-comparison of perspectives between different groups of participants (healthcare practitioners across different settings and relatives of deceased patients)
The paper generated a lively discussion among clinicians, researchers and academics, and we thank the authors for drawing attention to this important area.
The Cicely Saunders Institute journal club reviewed this paper on Wednesday 5th July 2017. We enjoyed discussing this paper and felt that the authors had addressed an important area, especially with the increasing importance on how we coordinate services at the end-of-life. The authors provided detailed information about the settings, which was useful in understanding the context in which the data was collected. Additionally, the authors provide an allied health professional perspective, highlighting the difference that can be made by changes to the environment and equipment.
We felt that the authors could have applied a theoretical framework to strengthen understanding of the proposed topic and their findings, such as Andersen’s healthcare utilisation model. We were interested in their focus on patient, carer and professional views, but felt that these could have benefitted from triangulation in the narrative of the paper.
The authors highlighted many interesting aspects (tipping points for carers, how patients will manage increased risk to be able to stay home), we would have liked supplementary materials to explore these further, as the authors collected such a wealth of data from both interviews and observations.
This paper was discussed at the Cicely Saunders Institute Journal Club on Wednesday 7th June.
This paper reports a well conducted trial of an intervention to improve end of life care in hospitalised elderly people. The authors are to be commended for addressing a clinical priority in a population where end of life care is under-researched.
We discussed this paper in a clinical-academic journal club. Our discussion of the paper was lively and generated a series of reflections on the methods used in the conduct of the trial as well as broader issues relating to the aims and processes of the study intervention.
The long study set up period was considered a strength, enabling participating wards to become accustomed to the data collection procedures before the commencement of the study. We discussed the challenges related to selecting the proxy-reported primary outcome measures, and the potential impact of the unblinded nurses assessing outcomes of care they themselves delivered.
We also discussed whether family recollection of symptom control several weeks into bereavement was a reliable measure of care quality, as it may not capture all the factors contributing to their experience of care, potentially confounding their report. It was suggested that collecting family members’ data via face to face interviews could enhance analysis of the quantitative findings.
The intervention, as reported in this paper, supported by previously published development work, represents a comprehensive effort to improve the quality of care for elderly people dying in hospital settings. The group recognised the challenges and the range of competencies required of hospital medical and nursing staff delivering end of life care. We wondered how the reported changes to the training components of the intervention addressed criticisms of the Liverpool Care Pathway in terms of improving competencies in compassionate communication with families. We discussed the possibility of measuring family care givers experience of receiving safe, compassionate care as an alternative outcome for this intervention.
In their discussion the authors report that qualitative work is to be conducted to explore the findings of the study in more depth, particularly those related to poorer family satisfaction with care in the intervention group. We felt this potential negative effect on families should be investigated before further roll out of the intervention We look forward to reading further outputs from this extensive and commendable body of work.
Commentary by Jo Bayly, Dr Simon Etkind and Dr Wei Gao
This paper was discussed on 12 May 2017 by the MSc students in Palliative Care at the KCL Cicely Saunders Institute.
The study, that we read with great interest, is a retrospective cohort study examining the association between palliative homecare services and the number of emergency department visits (in regards to both high and low acuity). Previous studies have shown that palliative care homecare services help reduce patients’ consecutive visits to emergency department. Therefore, in this study the authors tested the hypothesis that life-threatening visits could be reduced with the induction of palliative homecare services and education in treating high acuity symptoms at home.
The study used data from the Ontario Cancer Registry, including a large number of patients (54,743). The study showed that palliative homecare services could reduce the emergency department visit rate in both high and low-acuity groups, which could be considered a benefit of palliative homecare services. However, more information on the definition and the way of addressing palliative homecare services would allow better understanding of the generalizability of this finding. The authors used the Canadian Triage and Acuity Scale national guidelines as the classification, but we would have liked more information on the triage system and the allocation of patients according to their symptoms. For example, pain throat, malaise and fatigue are subjective symptoms which are less commonly classified as emergency or resuscitation-required, but in the study these were allocated in both acuity levels (high and low). We considered that this classification might affect the result significantly, therefore we would have appreciated further explanations.
Ka Meng Ao, Ming Yuang Huang, Pamela Turrillas, Myongjin Agnes Cho
This paper was discussed on 2.5.17, by students on the KCL Cicely Saunders Institute MSc in Palliative Care
The paper explores the experiences of cleaning staff in a hospital setting on various wards. We thought it was a very interesting and thought-provoking topic which had not been examined in depth before. The study uses a mixed methods approach with qualitative interviewing and focus groups, followed by a questionnaire study for quantitative data.
The study gives an interesting perspective of staff who have regular and prolonged contact with patients, but are little studied in this regard. It prompted discussion regarding the input that non clinical staff can give.
Recruitment for the qualitative part was difficult leading to low numbers and saturation not being reached. The recruited participants were all female and many were non-native speaking.
According to the COREQ criteria, we would have liked more information about who the researchers were, their relationship with the participants, the settings of the interviews and whether this could influence their responses.
It would also have been beneficial to understand how the questionnaire was developed from the themes identified in the qualitative part of the study and of any attempt at validation etc. We were unclear if they meant to use this questionnaire for future research or service implementation, like for instance psychological support to "non-clinical" staff.
We noticed the long time interval between the study taking place (questionnaires were distributed in 2008) and publication, and it would be useful to know the reasons behind this and if there was any follow up research in the intervening years.
Future research would be interesting in other settings: for example in a hospice where patients die more frequently than various hospital areas or among other components of "non clinical" staff, as for instance secretaries or volunteers.
Anna Oriani, Sarah Hanrott and Konstantina Chatziargyriou
This paper was discussed on 2.5.17, by students on the KCL Cicely Saunders Institute MSc in Palliative Care
We read with interest the systematic review article by Cahill et al on the evidence for conducting palliative care family meetings.
We congratulate the authors on their effort to include as many papers as possible by using a wide search strategy. Ultimately, only a small number of papers were relevant to this review and were included. The authors found significant heterogeneity within the various studies, in terms of the patient settings, interviewer background, and country of origin and culture. Study methods included both qualitative and quantitative designs, and a range of outcome measures, but there was a notable lack of RCT studies.
Two studies found a benefit of family meetings using validated outcome measures. A further four found a positive outcome of family meetings, but with non-validated outcome measures. We felt that the lack of validated outcome measures does not necessarily exclude their value.
We agree with the conclusions of the authors that there is limited evidence for family meetings in the literature and that further research would be of value. The small and diverse sample size leads to the potential for a beta error (not finding a difference where one exists). We were surprised by the final statement of the abstract that family meetings should not be routinely adopted into clinical practice, and we do not feel that the data in the paper support this: the absence of finding is not synonymous to the finding of absence. Further, our experience in three health care settings (UK, Canada, Switzerland) is that family meetings are already widely and routinely used.
This paper was reviewed in the Cicely Saunders Institute Journal Club on 1st March 2017.
The paper reports on the independent associations of income, education and multimorbidity with aggressiveness of end of life care, using rich data from the Health and Retirement Study (HRS) linked to the National Death Index (NDI) and Medicare data. We enjoyed discussing this paper and agree with the authors about the importance of understanding social determinants alongside clinical determinants of care at the end of life. We liked the measure of multimorbidity used, comprising of items related to comorbidity, functional limitations and geriatric syndromes, and thought this comprehensive approach was useful in this population. We were not sure why the sample was limited to fee-for-service patients and whether this may have disproportionately excluded some socio-economic groups. As a non-US audience we would have welcomed some further justification for restricting the sample in this way and discussion of potential limitations, perhaps using a CONSORT diagram to explain the steps. We enjoyed the presentation of the bivariate associations in the bar charts, helping us to understand the U and J shaped relationships between some of the variables. More information about what exactly the income variable was capturing (i.e. including pensions or not, and whether the household income was total or averaged across the number of people in the household) would have been useful. We also felt the race variable was broad and interpretation of the results would have benefited from more refined categories. Overall the paper sparked a good discussion about the importance of measuring social determinants and illness and function related factors in end of life populations and how best to capture these.
The Cicely Saunders Institute journal club discussed this paper on 02/11/2016
The need to address early rehabilitation in individuals with critical illness is an important clinical priority. In meeting the needs of this group, clinicians need to consider who is likely to benefit and to what extent, it is also important to address possible harms that may arise from intervention (see AVERT, Lancet 2015). This paper addresses an important area of practice in the surgical intensive care environment.
We valued our discussion of the paper, which generated a number of reflections on the methods used and the wider applicability of the intervention. In rehabilitation and palliative care practice goal-setting to target intervention is a widely used approach. In many rehabilitation contexts, goals are set in conjunction with patients, carers and the clinical team. The method used here was somewhat different and used the Surgical ICU Optimal Mobilisation Score (SOMS), which in our view was more akin to a protocol. Nevertheless, the SOMS facilitated targeting of intervention at the individual ability level and seemed appropriate to the ICU environment, where patient engagement in goal setting maybe less practical in some instances.
We noted that a significant difference was identified in delirium-free days in favour of the experimental group and that the mean difference was three days. We wondered if the authors had any further comment on this and its relationship to the beneficial outcomes identified, particularly reduced length of stay. We reflected that reduced delirium may result in improved ability to engage in rehabilitation practice.
The Cicely Saunders Institute journal club discussed this paper on 5th October 2016.
We thought that this review addressed an important question in relation to the pharmacological management of breathlessness at the end of life, and agreed that an update to the previous Cochrane review in this area was warranted.
We were interested in the selection of papers and the fact that some of the studies in the original Jennings et al review were deemed of insufficient quality to include in the update. We also wondered if more information could have been included about the authors’ definition of “advanced progressive illness”.
There was a lively discussion about the heterogeneity of included studies, which was attributed to variations in individual study design, and in the drug, dose and route used for the intervention. Some argued that focusing solely on studies evaluating morphine sulphate, which has high affinity for the µ opioid receptor (the subtype present in the lung) and also appeared to have the most promising results in sub-group analysis, might have provided a clearer picture of the benefit of opioids. Others pointed out that pooling studies for meta-analysis provides a larger sample, and that focusing on morphine alone would exclude patients with renal impairment.
We noted that when reporting the breathlessness outcomes, it would have been useful to define a minimal clinically important difference in breathlessness as well as an effect size, since it is difficult to tell if the standardised mean differences from the meta-analysis would be clinically relevant. In addition lack of standardisation of outcome measurements limited the potential meta-analysis.
We considered that as presented in this paper, the evidence on opioids in breathlessness is insufficient to guide practice. We agreed with the authors that larger, fully powered studies with adequate wash out periods and standardised dosing schedules are the starting point to improve the evidence base. We thought that focusing future studies on a single opioid (morphine sulphate seems the most promising candidate) might reduce heterogeneity and allow clearer measurement of any benefit.
Comment written by Dr Simon Etkind and Dr Sabrina Bajwah
The Cicely Saunders Institute journal club discussed this paper on Wednesday 7th September 2016.
We felt this is an important study that is opening the ‘black box’ of an intervention based on the habit formation model. The title itself stimulated discussion and reflection on the challenges of reducing sedentary behaviour.
We enjoyed discussing the development of the habit–based intervention for older adults and the protocol for the randomised controlled trial. The paper is presented as a study protocol, yet the first few pages actually describe the developmental stage of the intervention. We felt the development phase warranted being presented more fully in a separate paper. Questions arose in our discussion related to the nature of the adverse health consequences associated with sedentary behaviour and physical inactivity.
We commented on the pros and cons of publishing a protocol for a feasibility trial, including the need to publish amendments one year later. It was not clear how the behaviour change techniques utilised in the usual care fact sheet differed from those in the intervention booklet. Whilst we acknowledged there may be practical reasons for not presenting both the booklet and the control fact sheet in the protocol paper, we agreed that it would have been interesting to be able to see and compare these two documents.
We noted the authors acknowledgement of the difficulty of attributing a behaviour change effect to the habit formation elements in the booklet. We also discussed the possible contextual factors that might contribute to any effect and were interested in how the long term impact of habit-based interventions could be evaluated.
The Cicely Saunders Institute journal club discussed this paper on 03/08/2016
Considerations around conducting qualitative interviews with palliative and end of life care patients, particularly in the home setting, is an important and underrepresented area of the literature.
We enjoyed discussing this paper and felt it raised some important questions. We were particularly interested in the methods, and felt that more information would have been valuable. For example how were participants for the consensus meeting chosen, what topics were selected for discussion and how these were selected/ shortlisted, levels of agreement and consensus, and area of discordance during the discussion, ethical approval and consent processes prior to the meeting, and at what point consensus was reached (was this during or after the meeting)? A section detailing limitations of this research would be helpful when interpreting the results.
We had an interesting discussion around potential conflicts of interest that might arise when all participants of a consensus group are authors of a subsequent publication, and we are not aware of any evidence around this? During our journal club we discussed many of the benefits of conducting interviews in participant’s home setting, which might have been interesting to emphasise more in the paper. Practical issues and the importance of safety are areas that require consideration when planning and conducting research in home settings, and we would have been interested to see more discussion of this. We thought it might also be helpful to compare interviews settings (hospital, hospice, home, etc) and highlight key differences.
This paper was discussed at a Journal Club at the Cicely Saunders Institute, King's College London, on Wednesday 1st June, 2016.
We felt the subject matter under study was extremely important and has significant implications for clinical practice. The experience of medical professionals who support bereaved children is under researched and this study makes an important contribution to the body of evidence in this field. We discussed the recruitment and sampling procedures used and felt that the self-selecting nature of the sample may limit the representativeness of the findings. The findings may exclude the experiences of certain groups such as men (as a large proportion of the sample were women) and people who experience significant distress due to bereavement. However, we acknowledge the difficulties in recruiting a population that is considered vulnerable and commend the authors for providing this evidence to back the need for more support for both bereaved children and medical professionals supporting them. Moreover, we wondered how the findings from the two groups of participants (i.e. bereaved children and medical professionals) linked together and whether it would be worth separating the findings from these two participant groups and discussing them in more detail. The findings of this study can be used to make recommendations to clinical practice (e.g. train clinicians in bereavement support), as well as to hospitals (e.g. make hospital environments more child-friendly). We look forward to more research on the experience of bereavement so that we can support bereaved individuals better.
Commentary by Cathryn Pinto (@CathrynPinto) and Steve Marshall (@hollowaystevo)
The Cicely Saunders Institute journal club discussed this paper on Wednesday 6 April 2016.
We enjoyed discussing this paper and felt that the authors used routinely available data innovatively to examine important health effects on a large number of bereaved informal caregivers, particularly exploring differences between those living with patients of different diagnoses. We were pleased by the inclusion of dementia and COPD, which are often neglected compared with bereaved caregivers of those with cancer.
An interesting part of our discussion focused on those excluded from the study. A suggestion was that it would have been interesting to have divided the numbers in the first exclusion box of Figure 1, to identify the proportion of those without a cohabitee separate from those in non-eligible households (and the reasons for their ineligibility), particularly as these two groups comprised more than 75% of the data. We also wondered why the study solely focussed on spousal/partner caregivers, rather than other family members and friends?
We discussed how the political landscape might impact on informal caregivers, for example the Care Act 2014. Given the future structural changes in funding caregiving, we found it interesting to reflect on how legislative changes may affect outcomes for caregivers.
This interesting study recognises the important role that informal caregivers have in allowing people to die at home and ensuring their preferences can be met, but whose burden is currently under-measured. In future it would be useful to explore further the identification of informal caregivers on GP registers.
The Cicely Saunders Institute journal club discussed this paper on Wednesday 2nd March 2016. We agreed that this is an important study that adds to the growing body of evidence on the cost saving effects of palliative care, which has the potential to influence policy and commissioners.
We enjoyed discussing the prospective cohort design of the study and the use of propensity score matching to address problems of selection bias. We commended the large number of variables that were included in the propensity matching; however we also questioned the impact of omitting some important potential confounders, such as post-discharge survival time. We noted that those with a diagnosis of dementia were excluded from the study. Whilst we acknowledged there may be practical reasons for this, such patients may have higher numbers of comorbidities, higher associated costs and possibly be more likely to benefit from palliative care. We agreed that enabling participation of those who lack capacity by gaining assent via a consultee and obtaining proxy responses would strengthen future studies of this design.
The study examines the impact of palliative care consultation on hospital costs only without assessing its concurrent impact on patients and carer outcomes, which limits the impact and relevance of the findings. Authors acknowledge this limitation and state that further analyses will assess the effect of palliative care on patient and carer outcomes. We look forward to seeing these findings presented in future publications to strengthen the evidence regarding hospital palliative care consultations.
The Cicely Saunders Institute journal club reviewed this paper on Wednesday 3rd February 2016. We enjoyed discussing it and felt that the authors had addressed an important and understudied area of medical training. On the one hand, it is recognised that junior doctors increasingly need to be able to interact with terminally ill and other vulnerable groups of patients who need specialist palliative care and rehabilitation. On the other hand, there can be a common perception that it is unethical or unnecessary to involve the terminally ill in medical student teaching.
To investigate this issue in greater depth, the authors’ objective was to review available literature on how terminally ill patients feel about being involved in undergraduate medical teaching. Results were presented on a PRISMA flow chart, and studies appraised using a quality scoring system.
We felt that the paper would have been improved by the inclusion of clearer aims. The focus on patients’ views was interesting, and we wondered if the authors had considered extending this to include family perspectives.
Future studies could take the question beyond ‘should we involve terminally ill patients’ to ‘how and when’ it might be more or less acceptable to involve terminally ill patients in undergraduate medical education. Our discussions also considered whether this question could be extended to other life-limiting populations, such as people with complex neurological conditions, and to other cultures, where health systems and beliefs differ from the UK NHS system.
The Cicely Saunders Institute journal club reviewed this paper on Wednesday 4th November 2015.
We enjoyed discussing this paper and appreciated that the authors had tackled an important question about the efficacy of nutritional interventions, which are widely used in the NHS and associated with substantial costs, but with little evidence for improving function in this population. The paper reports an interesting example of a feasibility trial. We agreed with the authors that the participating care homes are unlikely to be representative due to their prior involvement in a dietetic intervention, which limits the conclusion regarding the feasibility of a future trial beyond these care homes. The authors recognised that using weight and BMI as outcomes is problematic; despite being widely used clinical markers they are not directly measuring or necessarily indicative of function. Therefore, we wondered if this feasibility trial might have included alternative outcomes more aligned with the aim of the study. One suggestion is to look at incidence of pressure ulcers or infections which would be available in routinely recorded clinical notes. In addition, we were interested that consent was not sought from most participants and felt this warranted further attention and justification – consenting adults who lack capacity presents challenges but is not impossible. However, we were pleased to see this study contributing to the growing body of work in the care home population.
Commentary by Joanna Davies (@JoannaDavies58), Research Assistant at the Cicely Saunders Institute, KCL.
This paper was discussed at a Journal Club at the Cicely Saunders Institute, King's College London, on Wednesday 7th October 2015.
This study is a nice example of how a discrete choice experiment (DCE) can be used in palliative and end-of-life care to assess preferences for aspects of care. It also raises some very interesting questions about the differences in priorities and the extent to which caregivers might be able to act as a proxy for patients, an important consideration for end-of life care. Our Journal Club discussed the work required to ensure sufficient attribute identification for a robust DCE, and wondered if the attributes decided upon in this paper sufficiently captured what is most meaningful for patients and caregivers at the end of life, i.e., there was no mention of a systematic review used to develop the attributes (see Bridges et al., 2011 for an example of DCE reporting guidelines). We also would have liked to see a table of the probit regression output for clarity on how the willingness-to-pay was calculated, and more detail on this in the methods. Furthermore, we found it confusing that the authors state in the discussion that their sample size was too small to explore interaction effects, while it appears they recruited 70% more than their minimum acceptable sample size – some explanation would have been helpful. Lastly, we wondered about the potential risk of bias of only including those patients who knew their diagnosis. This may limit the generalisability of the findings, even to a Singapore context. We enjoyed discussing this paper, and look forward to more papers using DCE methodology in palliative and end-of-life care.