Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs

Objectives: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. Methods: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. Results: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that 'palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics - larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care - were associated with agreement that palliative care was central to a GP's role. Conclusion: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist palliative care

The development of a questionnaire to assess the attitudes of older people to end-of-life issues (AEOLI)

Objectives: To develop an end-of-life attitudes questionnaire for use in a large community-based sample of older people. Design: Nominal groups and standardization of questions. Participants: Eighteen older people, ten academics and five specialist palliative care health professionals were involved in nominal groups. Thirty older people took part in initial pilot work and a further 50 were involved in reliability testing. Results: A 27-item attitudes of older people to end-of-life issues (AEOLI) questionnaire. Discussion: In modern times, death and dying predominantly occurs among older people and yet we know very little about older people's attitudes to end-of-life care. The AEOLI questionnaire can be used in large scale surveys to elicit attitudes on end-of life issues considered important by older people and health care professionals

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%: χ(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 (χ(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

Can the Spitzer Quality of Life Index help to reduce prognostic uncertainty in terminal care?

Data from an on-going trial of co-ordinating care for terminally ill cancer patients are used to investigate whether the Spitzer Quality of Life (QL) Index can be used to reduce prognostic uncertainty in terminal care. Four questions are addressed. First, can doctors and nurses distinguish between patients with a prognosis of more or less than 1 year? Second, do the medical and nursing staff differ in their ability to estimate prognosis? Third, are there differences in the length of life remaining between groups of patients with different QL Index scores? Fourth, how well does the QL Index predict the likelihood of individual patients dying within 6 months of assessment? Doctors and nurses assigned between 17 and 25% of patients to the wrong prognostic group and were as likely to over-estimate as to under-estimate life expectancy. Medical and nursing staff did not differ in their ability to make prognostic judgements. Patients with a low QL Index score were more likely to die within 6 months than those with higher scores, but scores on the Index were not strong predictors of 6-month survival in individual patients. The Index is not accurate enough to be used to predict what sort of treatment terminally ill patients will require in the future and for how long. Nevertheless, it may prove valuable for those planning services for terminally ill cancer patients who require information on the levels of need in a population

Physicians' experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life

OBJECTIVE: The use of continuous sedation until death for terminally ill cancer patients with unbearable and untreatable psychological and existential suffering remains controversial, and little in-depth insight exists into the circumstances in which physicians resort to it. METHODS: Our study was conducted in Belgium, the Netherlands, and the UK in hospitals, PCUs/hospices, and at home. We held interviews with 35 physicians most involved in the care of cancer patients who had psychological and existential suffering and had been continuously sedated until death. RESULTS: In the studied countries, three groups of patients were distinguished regarding the origin of their psychological and existential suffering. The first group had preexisting psychological problems before they became ill, the second developed psychological and existential suffering during their disease trajectory, and the third presented psychological symptoms that were characteristic of their disease. Before they resorted to the use of sedation, physicians reported that they had considered an array of pharmacological and psychological interventions that were ineffective or inappropriate to relieve this suffering. Necessary conditions for using sedation in this context were for most physicians the presence of refractory symptoms, a short life expectancy, and an explicit patient request for sedation. CONCLUSIONS: Physicians in our study used continuous sedation until death in the context of psychological and existential suffering after considering several pharmacological and psychological interventions. Further research and debate are needed on how and by whom this suffering at the end of life should be best treated, taking into account patients' individual preferences

Challenges to conducting research with older people living in nursing homes

<p>Abstract</p> <p>Background</p> <p>Although older people are increasingly cared for in nursing homes towards the end of life, there is a dearth of research exploring the views of residents. There are however, a number of challenges and methodological issues involved in doing this. The aim of this paper is to discuss some of these, along with residents' views on taking part in a study of the perceptions of dignity of older people in care homes and make recommendations for future research in these settings.</p> <p>Methods</p> <p>Qualitative interviews were used to obtain the views on maintaining dignity of 18 people aged 75 years and over, living in two private nursing homes in South East London. Detailed field notes on experiences of recruiting and interviewing participants were kept.</p> <p>Results</p> <p>Challenges included taking informed consent (completing reply slips and having a 'reasonable' understanding of their participation); finding opportunities to conduct interviews; involvement of care home staff and residents' families and trying to maintain privacy during the interviews. Most residents were positive about their participation in the study, however, five had concerns either before or during their interviews. Although 15 residents seemed to feel free to air their views, three seemed reluctant to express their opinions on their care in the home.</p> <p>Conclusion</p> <p>Although we experienced many challenges to conducting this study, they were not insurmountable, and once overcome, allowed this often unheard vulnerable group to express their views, with potential long-term benefits for future delivery of care.</p

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

<p>Abstract</p> <p>Background</p> <p>Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.</p> <p>Methods/Design</p> <p>Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified.</p> <p>Discussion</p> <p>Collecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future.</p> <p>Trial registration</p> <p>National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.</p

The networks of care surrounding cancer palliative care patients

Objectives: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs. Method: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was ‘involved in their care’ and any known pathways of communication between them. One hundred of these people (35 doctors, 32 nurses, 17 professions allied to medicine, 8 family members and 8 others) were also interviewed. Maps of people/teams and the connections between them for each patient were then reconstructed using social networking software (PAJEK). Results: The 24 patients identified a total of 619 people or teams (mean 26, median 22, range 9–45 per patient) contributing to their care. Selected care network maps are displayed, illustrating the extent and nature of the care networks supporting palliative care patients. Common members of care networks for patients with palliative care needs are revealed, but their individual and unique nature is also apparent. Conclusions: The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patient's care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision