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.

Symptom management in patients with established renal failure managed without dialysis.

Increasing numbers of patients with chronic kidney disease Stage 5 (GFR <15ml/minute) are being managed without dialysis, either through their own preference or because dialysis is unlikely to benefit them. This growing group of patients has extensive health care needs. Their overall symptom burden is high, and symptom prevalence matches or exceeds that in other end of life populations, both with cancer and other non-cancer diagnoses. These symptoms may often go unrecognised and under-treated. Regular symptom assessment is necessary, together with pro-active management of identified symptoms. Pain can be managed using the principles of the World Health Organisation analgesic ladder. Not all opioid medications are recommended for these patients. Paracetamol, tramadol, and fentanyl are the most appropriate medications for steps 1, 2 and 3 respectively. There is limited evidence on the use of buprenorphine, oxycodone and hydromorphone. Methadone is safe but should only be prescribed by a clinician experienced in its use. Morphine and diamorphine are not recommended because of metabolite accumulation. Pruritus is also challenging to manage. The evidence for pharmacological interventions to alleviate pruritus is summarized, and a pragmatic approach to management suggested. Emollients, capsaisin cream, antihistamines, thalidomide and ondansetron may be helpful, according to the extent and pattern of pruritus. Symptoms may frequently be due to co-morbid conditions, not renal disease itself, and managing them is difficult because of the constraints on the use of medication which kidney failure imposes. Collaboration between renal and palliative specialists can help identify ways to achieve best care for these patients.

Attitudes of Danish doctors and nurses to palliative and terminal care.

BACKGROUND: The WHO definitions of palliative care have been adopted in Denmark and implemented in The National Guidelines from 1999, but service developments have been very slow and not according to the recommendations. Attitudes to palliative care of Danish doctors and nurses may in part account for this. OBJECTIVE: To assess the attitudes to issues related to palliative care of doctors and nurses in a Danish county hospital and the related primary care services. DESIGN: Cross-sectional survey using a mailed, self-administered questionnaire answered anonymously. PARTICIPANTS: Nurses and doctors employed in a county hospital in Denmark, homecare nurses and general practitioners from the related primary care services. OUTCOME MEASURES: The responses from the groups were compared by chi2 statistics (where ordinal variables with chi2 for trend). Data were analysed using SPSS 10.0. RESULTS: 347 responded, response rate 76%. Eighty-one per cent of all respondents were currently caring for terminally ill patient(s), 94% had done so within the last six months. Hospital doctors see more terminally ill patients than GPs (P = 0.002). Comparison of doctors (both hospital and GPs) with nurses showed that nurses were more likely to definitely agree that palliative/terminal care was a rewarding part of their work (61% 'definitely agree' versus 30%), and they were less likely to prefer to leave care of these patients to others (4% 'definitely/probably agree' versus 9%). Nurses reflected more on existential matters (80% 'definitely/probably agree' versus 63%) and were more likely to agree that dealing with a dying patient made them aware of their own feelings regarding death (97% 'definitely/probably agree' versus 80%). Only 7% of all respondents reported 'being an active member of a religious community'. Ninety-two per cent of all respondents agreed that doctors play a key role in reducing the suffering of dying patients, but 59% of nurses versus 9% of doctors 'definitely/probably agree' that 'it is primarily the task of nurses to deal with patients reactions to death'. There were significant differences between hospital doctors and GPs, with the former less likely to agree that palliative and terminal illness is rewarding, more likely to leave care of dying patients to others, and more likely to 'probably' or 'definitely agree' that it is more satisfying to work with patients who will improve. Home care nurses reflected more on existential matters than their hospital colleagues, and were more likely to 'definitely agree' that palliative/terminal care is rewarding. Differences between groups seemed to be due to profession (doctor versus nurse) and setting (hospital versus community) rather than age or gender. CONCLUSION: These findings suggest that in Denmark nurses demonstrate more positive attitudes to the care of palliative/terminally ill patients than doctors, and that attitudes amongst doctors and nurses working in the community are more positive than those of the colleagues in hospitals. There is currently little education in the principles and practice of palliative care in Denmark. These findings will inform the development of appropriate palliative care education for doctors and nurses working both in the hospital and in the community in Denmark. They also raise the possibility that part of the inertia in the development of palliative care in Denmark is related to the lack of education and, in particular, to the need of support for doctors and nurses providing terminal care so they are enabled to be more reflective on the care they currently provide. There is evidence that education in palliative care can change health professionals' attitudes to palliative and terminal care, and this now needs to be investigated in Denmark.

Domiciliary chemotherapy with gemcitabine is safe and acceptable to advanced non-small-cell lung cancer patients: results of a feasibility study.

A study was conducted to investigate the feasibility and acceptability of administering single-agent gemcitabine to patients with advanced non-small-cell lung cancer (NSCLC) in their own homes. Gemcitabine is an active agent in NSCLC with a good toxicity profile and lends itself to this type of investigation. A total of 24 patients were studied; as only one patient required gemcitabine to be changed from home administration to hospital administration, domiciliary gemcitabine is feasible. A total of 249 injections of gemcitabine were given, the mean number of courses being 3.5, range 1-6. The gemcitabine was given at 1000 mg m(-2) on days 1, 8 and 15, the courses being repeated every 28 days. All patients received their first course in hospital and in total 147 were given at home and only 14 in hospital on courses 2-6. Furthermore, both the patients and carers reported positively on the use of domiciliary gemcitabine and preferred it over hospital administration. There was no evidence of increasing burden to community services during the domiciliary chemotherapy. Further studies investigating this approach are warranted.

Perspectives on symptom control in patients receiving community palliative care.

To remain at home, terminally ill cancer patients need good symptom control and support from informal carers. Few studies have explored the influence of informal carers on symptom control and vice versa. This qualitative case study was carried out in a specialist palliative care service (SPCS) to explore the reasons why patients were admitted for inpatient care. Ten patients were systematically selected and the main carer and health professionals involved in their care were invited to participate. Semi-structured, audiotape recorded interviews were conducted and a thematic analysis performed on the transcripts, using the 'Framework' approach. The results highlight the vital role that carers play in the assessment and management of symptoms in the community. However, carers reported difficulties in knowing what to monitor, how to interpret symptoms accurately and when to inform a professional. It was also reported that medication was not taken as it was prescribed and a number of reasons were given.

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.

Knowledge and communication difficulties for patients with chronic heart failure: qualitative study.

OBJECTIVES: To explore patients' understanding of chronic heart failure; to investigate their need for information and issues concerning communication. DESIGN: Qualitative analysis of in-depth interviews by a constant comparative approach. PARTICIPANTS: 27 patients identified by cardiology and care of the elderly physicians as having symptomatic heart failure (New York Heart Association functional class of II, III, or IV) and who had been admitted to hospital with heart failure in the past 20 months. RESULTS: Participants were aged 38-94 (mean 69 years); 20 had a New York Heart Association classification of III or IV. All had at least one concurrent illness. Participants sought information from the research interviewer about their heart failure, their prognosis, and likely manner of death. They also described several factors that could inhibit successful communication with their doctors. These included difficulties in getting to hospital appointments, confusion, short term memory loss, and the belief that doctors did not want to provide patients with too much knowledge. CONCLUSIONS: Good communication requires the ability both to listen and to impart relevant information. Effective and better ways of communicating with patients with chronic heart failure need to be tested. Disease specific barriers to effective communication, such as short term memory loss, confusion, and fatigue should be addressed. Strategies to help patients ask questions, including those related to prognosis, should be developed.

Home palliative care for terminal cancer patients: a survey on the final week of life.

As part of a large multicentre study on palliative care units in Italy, carried out between 1 January and 30 June 1995, we describe the place, circumstances and 'quality of death' of patients admitted to home palliative care. Data presented refer to 401 patients (67% of the 601 patients randomly selected for evaluation). Of these 401 patients 303 (76%) died at home. According to the Support Team Assessment Schedule (STAS) pain was fairly well controlled during the final week of life, while the control of other symptoms appeared to be less satisfactory. Invasive procedures were undertaken on 56% of patients, while in hospital the percentage increased to 75%. Twenty-five per cent of patients were totally pharmacologically sedated during the final 12 h of life. Neither the number of symptoms nor other factors were apparently associated with the decision to sedate the patient. The wide variations in the frequency of sedation among centres suggest that the choice to sedate the patient may reflect the provider's behaviour or services' policy rather than the patients' preference or needs. The definition of common criteria and guidelines for sedation of patients should be one of the topics for discussion among palliative care teams.

Age is not the crucial factor in determining how the palliative care needs of people who die from cancer differ from those of people who die from other causes.

A belief that the hospice philosophy is particularly applicable to younger people may account in part for the continued focus of palliative care on cancer patients, as it has been argued that age is the crucial factor in determining how cancer and non-cancer patients differ. We conducted a secondary analysis of the data from a UK population-based retrospective survey, the Regional Study of Care for the Dying, to critically examine this proposition. The sample comprised 2062 cancer and 1471 non-cancer deaths. On average cancer patients were younger. However, at all ages non-cancer and cancer patients differed significantly with, for example, different patterns of dependency and symptomatology. The cause of death--rather than age--is therefore the principal difference between cancer and non-cancer patients. The debate within palliative care on whether and how to provide services for non-cancer patients must move beyond a focus on group differences such as age between these and cancer patients and focus instead on understanding the varying problems non-cancer patients experience, and addressing how best to organize palliative care services to meet the individual needs of these patients.

Place of death and access to home care services: are certain patient groups at a disadvantage?

Research indicates that fewer people are able to die at home than would wish to do so. Furthermore the ability to die at home is unequally distributed depending on patient characteristics. Unless factors associated with home deaths are identified and interventions are targeted accordingly, further general improvements in care support may only help those already at an advantage. This paper reviews research investigating the relation between patient characteristics and home deaths and considers whether these variables influence place of death because they are associated with differential access to services, focusing on access to palliative home care. Patients with informal carer support were both more likely to die at home and to access palliative home care. Provision of home care did not remove the dependence on informal carers in achieving home death, however. An important target in improving home death rates is therefore better support for informal carers overall. Older patients were both less likely to die at home and to access home care. Once in home care they no longer were less likely to die at home. Although age related needs require consideration, improved access to home care is therefore likely to increase home deaths for older people. Women were less likely to die at home than men, yet younger women may be more likely to access home care. There is some evidence to suggest that men were less efficient as carers, which may help explain why women were less likely to achieve home deaths, while making their referral to home care more likely. While home care may help redress the gender imbalance, men may also need to be encouraged and enabled to take on the carer role. Cancer patients in higher socioeconomic groups were both more likely to die at home and to access home care. Hence home deaths may increase by improving access for lower socioeconomic groups to the services available.

A randomized controlled trial of the cost-effectiveness of a district co-ordinating service for terminally ill cancer patients.

The objective of this paper is to compare the cost effectiveness of a co-ordination service with standard services for terminally ill cancer patients with a prognosis of less than one year. We designed a randomized controlled trial, with patients randomized by the general practice with which they were registered. Co-ordination group patients received the assistance of two nurse coordinators whose role was to ensure that patients had access to appropriate services. The setting was in a South London health authority. Complete service use and outcome data were collected on 167 patients, 86 in the co-ordination group, and 81 in the control group. Our results, as previously reported, show that no differences in outcomes were detected between the co-ordination and control groups; the mean total costs incurred by the co-ordination group were significantly less than those of the control group. The co-ordinated group used significantly fewer inpatient days (mean 24 versus 40 inpatient days; t = 2.4, p = 0.002) and nurse home visits (mean 14.5 versus 37.5 visits; t = 0.3, p = 0.01). Mean cost per co-ordinated patient was almost half that of the control group patients 4774 pounds versus 8034 pounds, t = 2.8, p = 0.006). Although the unit cost data were relatively crude, these cost reductions were insensitive to a wide range of unit costs. These differences persisted when, in order to control for any putative differences in severity between the two groups, the analysis was restricted to patients who had died by the end of the study. The ratio of potential cost savings to the cost of co-ordination service was between 4:1 and 8:1. In conclusion, the co-ordination service for cancer patients who were terminally ill with a prognosis of less than one year was more cost effective than standard services, due to achieving the same outcomes at lower service use, particularly inpatient days in acute hospital. Assuming that the observed effects are real, improved co-ordination of palliative care offers the potential for considerable savings. Further research is needed to explore this issue.

Acceptability and perceived effectiveness of a district co-ordinating service for terminal care: implications for quality assurance.

As part of a randomized controlled trial of a new district co-ordinating service for the care of terminally ill cancer patients, the activities of the nurse co-ordinators and the acceptability and perceived effectiveness of the service were assessed. Co-ordinators' activities were self-recorded; professional caregivers completed a postal questionnaire; and family carers were interviewed at home. Thirty-eight per cent of patients allocated to the co-ordinators were not visited at home. Overall, 41% of professionals had heard of the co-ordinating service and 20% had been contacted. A third of relatives, whether allocated or not to the co-ordinating service, felt that terminal care of their patient was not well co-ordinated and that they did not know how to get the help they needed for their dying relative. It may be that the nurse co-ordinators were unwilling or unable to relinquish their skills in order to provide a 'broker' style of co-ordination. Perhaps less skilled co-ordinators would have been more successful. Moreover, the co-ordinating service had no budgetary responsibility. Those concerned with quality assurance in co-ordination of terminal care might consider the skill mix and professional training of the co-ordinators as well as their budgetary responsibilities and authority.

Randomised controlled trial of effects of coordinating care for terminally ill cancer patients.

OBJECTIVES: To measure effects on terminally ill cancer patients and their families of coordinating the services available within the NHS and from local authorities and the voluntary sector. DESIGN: Randomised controlled trial. SETTING: Inner London health district. PATIENTS: Cancer patients were routinely notified from 1987 to 1990. 554 patients expected to survive less than one year entered the trial and were randomly allocated to a coordination or a control group. INTERVENTION: All patients received routinely available services. Coordination group patients received the assistance of two nurse coordinators, whose role was to ensure that patients received appropriate and well coordinated services, tailored to their individual needs and circumstances. MAIN OUTCOME MEASURES: Patients and carers were interviewed at home on entry to the trial and at intervals until death. Interviews after bereavement were also conducted. Outcome measures included the presence and severity of physical symptoms, psychiatric morbidity, use of and satisfaction with services, and carers' problems. Results from the baseline interview, the interview closest to death, and the interview after bereavement were analysed. RESULTS: Few differences between groups were significant. Coordination group patients were less likely to suffer from vomiting, were more likely to report effective treatment for it, and less likely to be concerned about having an itchy skin. Their carers were more likely to report that in the last week of life the patient had had a cough and had had effective treatment for constipation, and they were less likely to rate the patient's difficulty swallowing as severe or to report effective treatment for anxiety. Coordination group patients were more likely to have seen a chiropodist and their carers were more likely to contact a specialist nurse in a night time emergency. These carers were less likely to feel angry about the death of the patient. CONCLUSIONS: This coordinating service made little difference to patient or family outcomes, perhaps because the service did not have a budget with which it could obtain services or because the professional skills of the nurse-coordinators may have conflicted with the requirements of the coordinating role.

Effects of reduction of acute hospital services on district nursing services: implications for quality assurance.

Two questions of importance to those concerned with maintaining standards and increasing the efficiency of Community Nursing are: (1) does reducing hospital provision alter the number of patients referred for Community Nursing or the type of care provided; (2) are Community Nursing Services directed towards those who most require them? A base-line study was carried out in the first quarter of 1988, before the closure of one of two general hospitals in an inner London Health Authority and was replicated in the same quarter of 1989, after all acute inpatient services had been transferred to the other hospital. Comparison of patients discharged before and after closure showed no significant differences in patients' age, sex, proportion living alone, length of stay in hospital, readmissions or deaths within one month of discharge. There was some decline in general nursing care. Total discharges declined by 20% while the number of referrals remained the same, indicating that proportionately more patients were discharged with a referral. Comparing referred and unreferred patients showed that Community Nursing Services were already being directed towards those most in need both before and after hospital closure. Results suggest that Community Nursing helps to maintain patients in the community.

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.