Judging the quality of care at the end of life: can proxies provide reliable information?

A major challenge in research into care at the end of life is the difficulty of obtaining the views and experiences of representative samples of patients. Studies relying on patients’ accounts prior to death are potentially biased, as they only represent that proportion of patients with an identifiable terminal illness, who are relatively well and therefore able to participate, and who are willing to take part. An alternative approach that overcomes many of these problems is the retrospective or ‘after death’ approach. Here, observations are gathered from proxies, usually the patient's next of kin, following the patient's death. However, questions have been raised about the validity of proxies’ responses. This paper provides a comprehensive review of studies that have compared patient and proxy views. The evidence suggests that proxies can reliably report on the quality of services, and on observable symptoms. Agreement is poorest for subjective aspects of the patient's experience, such as pain, anxiety and depression. The findings are discussed in relation to literature drawn from survey methodology, psychology, health and palliative care. In addition to this, factors likely to affect levels of agreement are identified. Amongst these are factors associated with the patient and proxy, the measures used to assess palliative care and the quality of the research evaluating the validity of proxies’ reports. As proxies are a vital source of information, and for some patients the only source, the paper highlights the need for further research to improve the validity of proxies’ reports

A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: results from a survey using the VOICES questionnaire

The importance of evaluating systematically the effectiveness of hospice care has been noted for at least 20 years. There is, however, limited evidence about whether and how the care provided to terminally ill patients by in-patient hospices in the UK differs from that provided in NHS hospitals. In this article, we, therefore, present a comparison of hospice in-patient care and hospital care for cancer patients in the UK, from the perspective of bereaved relatives who had experienced both types of care during the last 3 months of the patient’s life. The Office of National Statistics drew a random sample of 800 deaths in South London in 2002, and sent the person who registered the death (the informant) a Views of Informal Carers – Evaluation of Services (VOICES) questionnaire 3–9 months after the death, with up to two reminders. There was a response rate of 48%. For this analysis, 40 cancer patients whose informant reported both a hospice in-patient admission and a hospital admission in the last 3 months of life were identified. Informants answered the same questions about each admission and responses on these were compared. There were statistically significant differences between respondents’ views of hospice and hospital care on eight out of 13 variables measuring aspects of satisfaction with care, with a trend towards statistical significance on a further two: in all cases respondents rated hospice care more positively than hospital care. There were no differences in the experience of pain and breathlessness in the two settings, but respondents rated pain control by the hospice as more effective. In comparison to hospital care, from the perspective of bereaved relatives, hospice in-patient care provided better pain control, better communication with patients and families, and better medical, nursing and personal care, which treated the patient with more dignity. Further research is needed to confirm these findings using a wider sample of in-patient hospices in the UK and including the perspectives of patients. Providing high quality care for terminally ill patients in acute hospitals remains an important challenge

Feeding back survey research findings within palliative care. Findings from qualitative research

The feedback of research findings to practitioners and policy makers is an important component of palliative care research. Little is, however, understood about professionals’ views on the ways research findings should be fed back. This study used semi-structured telephone interviews with a vignette to understand professionals’ views on the feedback of survey research findings within palliative care. Content analysis of data uncovered a range of issues professionals emphasised as important to consider. These issues are discussed within the context of existing literature in order to raise the profile of research feedback within palliative care

Evaluating palliative care: bereaved family members’ evaluations of patients’ pain, anxiety and depression

Palliative care surveys often rely on bereaved family members to act as proxies to provide information on patient care at the end of life, after the patient's death. However, when comparing bereaved family members' assessments with those of the patients, agreement is found to be better for symptoms that are more concrete and observable than subjective aspects such as psychological symptoms and pain. To date, little is known about how proxies actually evaluate these types of symptoms. The present study used retrospective verbal protocol analysis to elucidate the thought processes of 30 bereaved relatives during their evaluations of patients' pain, anxiety and depression. The qualitative analysis raised awareness of the difficulties experienced by proxies when discerning the presence of symptoms. It also provided insights into the cues and strategies used when making decisions, contributing to a fuller understanding of how proxies distinguish symptoms. Recommendations are made to improve the design of retrospective palliative care surveys

Care of the dying stroke patient in the acute setting

Stroke is the third most common cause of death in England and Wales, accounting for 11% of all deaths. Predictors of early mortality following stroke have been known for over a century and include a history of stroke, age, disorientation to time and place and level of consciousness. To date, hospices and specialist palliative care services have focused on caring for terminally ill cancer patients, with 95% of their patients in 2000–2001 having cancer. However it has been acknowledged since its inception that the practices and principles of palliative care may be relevant to those dying from other conditions. Recently there has been a growing interest in palliative care for non-cancer diagnosis and increasing recognition that palliative care should be provided on the basis of need rather than diagnosis. Despite the high levels of mortality following stroke, to date, little has been published about dying from stroke. In this study we report on a prospective qualitative study of the nursing and medical care received by dying stroke patients

Participant recruitment in sensitive surveys: a comparative trial of ‘opt in’ versus ‘opt out’ approaches

BACKGROUND: Although in health services survey research we strive for a high response rate, this must be balanced against the need to recruit participants ethically and considerately, particularly in surveys with a sensitive nature. In survey research there are no established recommendations to guide recruitment approach and an 'opt-in' system that requires potential participants to request a copy of the questionnaire by returning a reply slip is frequently adopted. However, in observational research the risk to participants is lower than in clinical research and so some surveys have used an 'opt-out' system. The effect of this approach on response and distress is unknown. We sought to investigate this in a survey of end of life care completed by bereaved relatives.METHODS: Out of a sample of 1422 bereaved relatives we assigned potential participants to one of two study groups: an 'opt in' group (n=711) where a letter of invitation was issued with a reply slip to request a copy of the questionnaire; or an 'opt out' group (n=711) where the survey questionnaire was provided alongside the invitation letter. We assessed response and distress between groups.RESULTS: From a sample of 1422, 473 participants returned questionnaires. Response was higher in the 'opt out' group than in the 'opt in' group (40% compared to 26.4%: ?(2) =29.79, p-value<.01), there were no differences in distress or complaints about the survey between groups, and assignment to the 'opt out' group was an independent predictor of response (OR=1.84, 95% CI: 1.45-2.34). Moreover, the 'opt in' group were more likely to decline to participate (?(2)=28.60, p-value<.01) and there was a difference in the pattern of questionnaire responses between study groups.CONCLUSION: Given that the 'opt out' method of recruitment is associated with a higher response than the 'opt in' method, seems to have no impact on complaints or distress about the survey, and there are differences in the patterns of responses between groups, the 'opt out' method could be recommended as the most efficient way to recruit into surveys, even in those with a sensitive nature

Planning the first national end of life care survey

Background: The End of Life Care Strategy highlighted a need to evaluate care experiences by accessing the views of those who use end of life care services. The Strategy identified the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire, which is completed by bereaved relatives, as a potential method of evaluating these experiences. The DH commissioned this study to explore the feasibility of a national VOICES survey.Aims: To develop the most appropriate methods for a national end of life care survey by considering recruitment, sampling, online methods, ethics, increasing participation and support for participants.Methods: VOICES was re-designed following user/professional discussion groups and analysis of existing VOICES datasets. 1422 deaths registered in two PCTs were identified by the Office of National Statistics using stratified sampling methods. Coroner-registered deaths were excluded. Deaths were assigned to one of two trial groups to determine the most appropriate recruitment approach (opt-in vs opt-out). Online completion was offered to all informants. Local organisations representing minority ethnic groups collaborated in publicising the survey, interpreting services were provided and advertising posters were translated into five languages. A series of support structures was initiated.Results: Response rate was 33% and response was significantly higher in the ‘opt-out’ trial group (40%, p<0.001). There were no complaints in either group: only two informants called the support line. 19% of responders completed online. Minority group responses were low. As planned, data weighting was used to account for non-response bias. Excluded coroner-registered deaths were significantly different to included deaths on a series of parameters.Conclusions: The opt-out method is the recommended recruitment approach. Experiences of minority groups should be gathered using alternative methods. Coroner-registered deaths should be included and data should be weighted. VOICES detected differences between PCTs. It will be used in 2011/2012 together with these methods in the first national end of life care survey

Achieving preferred place of care and death: results from a post bereavement survey

Background: A key aim of the End of Life Care Strategy is to enable more people to die in their preferred place; this is often their own home. However, hospital remains the most common place of death, particularly for people dying from causes other than cancer.Aims: To explore end of life care preferences and determine predictors of achieving preferred place of death, home death and hospital death.Methods: The Office for National Statistics drew a proportionally allocated stratified sample of deaths registered in two PCTs between October 2009 and April 2010. Coroner-registered deaths and deaths under the age of 18 years were excluded. The VOICES questionnaire was sent to each informant (n=1422, usually bereaved relative) 6–12 months after the death. As planned, data were weighted to account for response bias.Results: 473 returned questionnaires (33%). 35% of respondents reported that the deceased had said where they wanted to die (mainly home 68%). This was apparently recorded for 36% of those expressing a preference. Only 1% was reported to have changed their mind about where they wanted to die. Cancer patients were significantly more likely to die at home than those who died from any other condition (p<0.001) and significantly more likely to have a record of preferences (OR=5.86). Having a record of preferences was significantly associated with both achieving preference (OR=21.0) and home death (OR=15.9) when adjusting for age, sex, deprivation, knowledge of imminent death, relationship of informant, cause of death and number of home services used. Conversely, a reduction in the odds of having recorded preferences was associated with hospital death (OR=0.20).Conclusions: Although, out of all causes, cancer deaths were most likely to occur at home, having a record of preferences was the only independent predictor of achieving preferred place of death

Language translation of outcome measurement tools: views of health professionals

Assessing the outcome and effectiveness of treatment is extremely important in nursing practice and it is vital that outcome measures are available to non-English speakers. We investigated health professionals’ views on translating outcome measures for use in nursing practice. Semi-structured interviews were conducted with a purposive sample of 10 health professionals. Content analysis of data identified the following two broad themes: meeting need and cultural considerations. Specific palliative care issues were also identified. Low literacy levels among ethnically diverse communities and the need to ensure cultural equivalence were perceived as major challenges for palliative nursing practitioners when translating outcome measures. Given increasing cultural diversity within the UK, health professionals considered clinical tool translation worthwhile because it helps to address inequalities in health-care provision for ethnically diverse communities. A consideration of the cultural context is needed when interpreting responses on translated outcome measures. However, translations into appropriate languages can help overcome communication barriers and minimize the need for family members to act as interpreters for patients with palliative care needs

Translating clinical tools in nursing practice

Background. The widespread use of clinical tools in nursing practice reflects their usefulness in guiding patient care, evaluating treatment effectiveness and conducting audit. Cultural awareness and the provision of culturally competent care is a high priority for nurses in the United Kingdom (UK), given patterns of increasing ethnic diversity. However, meeting the individual needs of patients can be difficult when language barriers hinder communication. One way to address these difficulties is to translate existing clinical tools.Aim. The aim of this paper is to appraise the potential for, and limitations of, translating clinical tools for use in nursing practice.Discussion. Drawing on a range of studies from the disciplines of health and social science, this review describes and discusses some key considerations relevant to translating clinical tools in nursing. These considerations include the need to ensure cultural equivalence, lack of familiarity with clinical tool formats in some cultures and its impact on responses, and low literacy levels in some populations.Conclusion. Clinical tools provide benefits in identifying patients' problems, guiding patient care, and evaluating treatments and interventions. Translating these tools can help to bridge the language gap that hinders good communication between nurses and patients. Translated clinical tools can be of acceptable cultural equivalence and validity if high quality translation methodologies are employed, together with an awareness of culturally relevant issues when interpreting the information gained from the tools