Gunn Grande

Supporting lay carers in end of life care: current gaps and future priorities

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers’ needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, “repair” approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

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.

Does hospital at home for palliative care facilitate death at home? Randomised controlled trial

Abstract Objective: To evaluate the impact on place of death of a hospital at home service for palliative care. Design: Pragmatic randomised controlled trial. Setting: Former Cambridge health district. Participants: 229 patients referred to the hospital at home service; 43 randomised to control group (standard care), 186 randomised to hospital at home. Intervention: Hospital at home versus standard care. Main outcome measures: Place of death. Results: Twenty five (58%) control patients died at home compared with 124 (67%) patients allocated to hospital at home. This difference was not significant; intention to treat analysis did not show that hospital at home increased the number of deathsat home. Seventy three patients randomised to hospital at home were not admitted to the service. Patients admitted to hospital at home were significantly more likely to die at home (88/113; 78%) than control patients. It is not possible to determine whether this was due to hospital at home itself or other characteristics of the patients admitted to the service. The study attained less statistical power than initially planned. Conclusion: In a locality with good provision of standard community carewe could not show that hospital at home allowed more patients to die at home, although neither does the study refute this. Problems relating to recruitment, attrition, and the vulnerability of the patient group make randomised controlled trials in palliative care difficult. Whilethese difficulties have to be recognised they are not insurmountable with the appropriateresourcing and setting. Key messages Terminally ill patients allocated to hospital at home were no more likely to die at home than patients receiving standard care Although the subsample of patients actually admitted to hospital at home did show a significant increase in likelihood of dying at home, whether this was due to theservice itself or the characteristics of patients admitted to hospital at home could not be determined The need to balance ideal research design against the realities of evaluation of palliative care had the effect that the trial achieved less statistical power than originally planned Particular problems were that many patients failed to receive the allocatedintervention because of the unpredictable nature of terminal illness, inclusion of other service input alongside hospital at home, and the wide range of standard care available The trial illustrated problems associated with randomised controlled trialsin palliative care, none of which are insurmountable but which require careful consideration and resourcing before future trials are planned

A systematic review of instruments related to family caregivers of palliative care patients

Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.

Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study

Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice. Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice. Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach. Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK. Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment. Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.

Death at home unlikely if informal carers prefer otherwise: implications for policy.

There is currently a considerable emphasis on enabling patients to die at home if this is their wish.1–3 Patient preference for a death at home increases likelihood of the patient actually dying there.4,5 However, likelihood of dying at home depends on the presence and ability of informal carers to provide home care.6 This can place considerable burden on informal carers, and their preferences regarding home care may not coincide with those of the patient.7 Only a few studies have actually considered the preference of the carer as well as that of the patient.4,8,9 Although one half or more of carers in these studies report a preference for death at home, at least initially, the proportion preferring home death is consistently smaller for carers than for patients. Little research has considered the extent to which such discrepancy between the expressed wishes of patients and carers influences likelihood of dying at home. A small study by Cantwell, et al.10 suggests there is a increased likelihood of death at home when both patient and carer express preference for home, but discrepancies were not investigated. We report data that enabled us to assess whether discrepancy between patient and carer view on preferred place of death influenced patients’ likelihood of dying at home. This was part of a larger study into preferred place of death, quality of care and carer bereavement outcome. We considered anonymous patient records of three hospice at home (H@Hs) services that routinely recorded both the patient’s and the main carer’s preferred place of care or death, as well as actual place of death. H@H recording practices differed somewhat in recording of place of care and death, and although the two are not identical, their boundaries blur towards the end of life. In the present analysis, they are grouped into one category. A total of 480 patients had been referred to the three H@Hs and died within the four month study period. Of these, H@Hs recorded the preferred place of care/death of the carer in 298 (62.1%) and the patient’s preference in 324 (67.5%) cases. Patient’s or carer’s preference was recorded in 367 (76.5%) of 480 cases in total. There were 255 patient and carer pairs in which preference could be compared. The main difference in views related to home care/death. Although 201 (78.8%) patients preferred home, only 169 (84.1%) of their carers concurred and 32 (15.9%) disagreed, with the main alternative preference being hospice (25 carers). Of 39 patients who preferred hospice, 35 of their carers concurred, whereas four carers preferred home. Otherwise, there were no discrepancies between patient and carer views. For the 201 patients who preferred home, likelihood of actually dying at home depended on agreement between patient and carer preference. Where both patient and carer preferred a home death, 122 (72.2%) of 169 patients died at home. Where the carer disagreed with the patient’s preference, only 8 (25.0%) of 32 patients died at home (X2 = 26.225, df = 1, P < 0.001). When both patient and carer preferred hospice, 25 (71%) of 35 patients died in hospice, but when the carer disagreed, three (75%) of four died in hospice and one at home. Carers’ preference was not related to their relationship to the patient. Percentages preferring home was similar for spouses and children (accounting for 61% and 29% of the sample, respectively) and somewhat lower for ‘other’, but not significantly so. Patients who have been referred to H@H towards the end of life probably receive more palliative care support and are more likely to desire death at home compared with dying patients in general. Our results therefore suggest that even within a relatively highly motivated, wellsupported patient population, the likelihood of dying at home is dramatically reduced if the main carer does not express a preference for death at home. Furthermore, more carers may have preferred death elsewhere than were recorded as there may be implicit pressure on carers to agree with patient’s wishes.7 The role of carers in delivering patient choice is increasingly recognised. However, our results suggest that if carers do not agree with the patient’s choice, service provider and policy aims of enabling patients to die at home, if this is their wish,1–3 are unlikely to be met.

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

Informal carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death.

This study investigated (a) whether carer bereavement outcome is affected by the achievement of the patient’s and/or carers’ preferred place of death and (b) the relationship between carer satisfaction with end of life care and bereavement outcome. Participants were 216 carers of patients referred to hospice at home (H@H). Prospective recording of preferred and actual place of death were obtained from H@H records. Carers’ level of grief and mental health and assessment of end of life care were obtained through postal survey three to four months post-bereavement. Fulfilment of carer preference for place of death only related to post-bereavement mental health at P < 0.1. Adequacy of psychological support showed the clearest relationship with bereavement outcome both in univariate and multivariate analyses. The level of support, particularly psychological, may be more important for carers’ bereavement outcome than achievement of the preferred place of death for the patient.

MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research

Background: There is little guidance on the particular ethical concerns that research raises with a palliative care population. Aim: To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. Design: Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated. Setting/participants: Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers. Results: The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation. Conclusions: The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

Recommendations for managing missing data, attrition and response shift in palliative and end-of-life care research: Part of the MORECare research method guidance on statistical issues

Background: Statistical analysis in palliative and end-of-life care research can be problematic due to high levels of missing data, attrition and response shift as disease progresses. Aim: To develop recommendations about managing missing data, attrition and response shift in palliative and end-of-life care research data. Design: We used the MORECare Transparent Expert Consultation approach to conduct a consultation workshop with experts in statistical methods in palliative and end-of-life care research. Following presentations and discussion, nominal group techniques were used to produce recommendations about attrition, missing data and response shift. These were rated online by experts and analysed using descriptive statistics for consensus and importance. Results: In total, 20 participants attended the workshop and 19 recommendations were subsequently ranked. There was broad agreement across recommendations. The top five recommendations were as follows: A taxonomy should be devised to define types of attrition. Types and amount of missing data should be reported with details of imputation methods. The pattern of missing data should be investigated to inform the imputation approach. A statistical analysis plan should be pre-specified in the protocol. High rates of attrition should be assumed when planning studies and specifying analyses. The leading recommendation for response shift was for more research. Conclusions: When designing studies in palliative and end-of-life care, it is recommended that high rates of attrition should not be seen as indicative of poor design and that a clear statistical analysis plan is in place to account for missing data and attrition.