Julia Addington-Hall

Depression in advanced disease: a systematic review - Part 1. Prevalence and case finding

Objective: To identify all literature regarding depression in patients with advanced cancer and among mixed hospice populations, and to summarise the prevalence of depression according to different definitions. Methods: A systematic review was performed using extensive electronic and hand searches. All studies with quantitative data on prevalence of depression were included and categorised according to their definition of depression. Results: We identified 46 eligible studies giving information on the prevalence of depression, and a further four which gave information on case finding. The most widely used assessment of depression was the Hospital Anxiety and Depression Scale (HADS), which gave a median prevalence of ‘definite depression’ (i.e., a score on the depression subscale of 10 of 29%, (interquartile range, IQR, 19.50 34.25%). Studies that used psychiatric interviews indicated a prevalence of major depressive disorder ranging from 5% to 26%, with a median of 15%. Studies were generally small (median sample size 88.5, IQR 50 108), had high numbers of nonresponders, and rarely gave confidence intervals for estimates of prevalence. Conclusions: Depression is a common problem in palliative care settings. The quality of much of the available research is poor, based on small samples of patients with very high nonparticipation rates. The clinical importance of depression is described in subsequent papers.

Randomised controlled trial of non-directive counselling, cognitive-behaviour therapy, and usual general practitioner care for patients with depression. II Cost-effectiveness

Abstract Objective: To compare the clinical effectiveness of general practitioner care and two general practice based psychological therapies for depressed patients. Design: Prospective, controlled trial with randomised and patient preference allocation arms. Setting: General practices in London and greater Manchester. Participants: 464 of 627 patients presenting with depression or mixed anxiety and depression were suitable for inclusion. Interventions: Usual general practitioner care or up to 12 sessions of non-directive counselling or cognitive-behaviour therapy provided by therapists. Main outcome measures: Beck depression inventory scores, other psychiatric symptoms, social functioning, and satisfaction with treatment measured at baseline and at 4 and 12 months. Results: 197 patients were randomly assigned to treatment, 137 chose their treatment, and 130 were randomised only between the two psychological therapies. All groups improved significantly over time. At four months, patients randomised to non-directive counselling or cognitive-behaviour therapy improved more in terms of the Beck depression inventory (mean (SD) scores 12.9 (9.3) and 14.3 (10.8) respectively) than those randomised to usual general practitioner care (18.3 (12.4)). However, there was no significant difference between the two therapies. There were no significant differences between the three treatment groups at 12 months (Beck depression scores 11.8 (9.6), 11.4 (10.8), and 12.1 (10.3) for non-directive counselling, cognitive-behaviour therapy, and general practitioner care). Conclusions: Psychological therapy was a more effective treatment for depression than usual general practitioner care in the short term, but after one year there was no difference in outcome.

A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer.

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.

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.

The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life

Chronic obstructive pulmonary disease (COPD) causes almost as many deaths as lung cancer, yet evidence about the impact of COPD in the latter stages of illness is limited. We assessed the healthcare needs of COPD patients in the last year of life through a retrospective survey of the informants of 399 deaths from COPD in four London health authorities between January and May 2001. We assessed symptoms, day to day functioning, contact with health and social services, formal and informal help with personal care, information received and place of death. We obtained data on 209 (52%) deceased subjects (55% male), average age at death was 76.8 years. Based on the reports of informants of the deaths: 98% were breathless all the time or sometimes in the last year of life; other symptoms reported all the time or sometimes included fatigue or weakness (96%), low mood (77%) and pain (70%); breathlessness was partly relieved in over 50% of those treated; control of other symptoms was poor, with low mood relieved in 8% and no treatment for low mood received by 82% of sufferers; 41% left the house less than once a month or never; 47% were admitted to hospital at least twice in the last year of life; 51% received regular check-ups for their chest; 36% had check-ups by a hospital consultant; 35% saw their general practitioner (GP) less than once every three months or never; 63% knew they might die; 67% died in hospital. Patients who died from COPD lacked surveillance and received inadequate services from primary and secondary care in the year before they died. The absence of palliative care services highlights the need for research into appropriate models of care to address uncontrolled symptoms, information provision and end of life planning in COPD.

The experience of dying with dementia: a retrospective study.

Objective. To describe the last year of life of people with dementia, their symptoms, care needs, use of and satisfaction with health services and the bereavement state of the respondent.

Regional Study of Care for the Dying: methods and sample characteristics:

The Regional Study of Care for the Dying (RSCD) was established in 1990 with the dual aims of providing district health authorities with an audit of local services for the dying, and of addressing questions about experiences of people dying from cancer, effectiveness of hospice care, and needs of, and appropriate service provision for, people dying from causes other than cancer. The survey methods are described in this paper, together with the characteristics and representativeness of the sample. An interview survey was conducted of family or others who knew about the last year of life of a random sample of people who died in 1990. It was based upon methods used in nationally representative surveys by Cartwright in 1969, and Cartwright and Seale in 1987. The setting was 20 district health authorities, who paid for local data collection. Approximately 270 deaths were randomly sampled in each district: 5375 deaths were sampled in total. As cancer patients are the focus of most services for the dying, cancer deaths were sampled disproportionately (54%). Interviews were obtained for 69% (3696) of the sample. The response rate varied significantly by cause of death, age and social class of deceased, and the degree of deprivation of the district. There were small, but statistically significant, differences in cause of death and age between those deaths for whom interviews were obtained and national figures for deaths occurring in 1990. The discussion addresses key issues in the study, including responses from ethical committees, response rate and quality of data. The survey has been successful, both in providing districts with information on local services, and in obtaining a large, broadly representative, sample of deaths, thus enabling many outstanding questions about the needs of dying patients and their families, and about appropriate service provision, to be addressed.

After-Death Interviews with Surrogates/Bereaved Family Members: Some Issues of Validity

After-death interviews with bereaved respondents are an important tool in the repertoire of researchers evaluating the quality of end-of-life care or investigating the experiences of people at the end of life. Despite the importance of after-death interviews to our understanding of the last months of life, the validity of the information gathered has received little attention. In this article, we review some of the available information, drawing on evidence from cognitive psychology as well as from palliative care studies. Findings from cognitive psychology indicate that memory is a dynamic process, influenced by emotion state and the individuals perspective at the time of the event and at recall. Further research is therefore needed to understand better the circumstances, types of information and research questions for which bereaved relatives are valid surrogates for people who have died.

How do cancer patients who die at home differ from those who die elsewhere

Our objective was to investigate how cancer patients who die at home differ from those who do not. A postbereavement survey of 229 people who registered the death of a random sample of cancer deaths in an inner London health authority was conducted. It was found that a fifth of patients (21%) died in their own home. Overall, 38% were reported to have expressed a preference for place of death, 73% of whom wanted to die at home. Only 58% achieved this. Having special equipment and stating a preference for place of death was associated with an increased likelihood of dying at home; using social and health services for social care was associated with a decreased likelihood of so doing. It was concluded that, as in previous studies, most patients who expressed a preference wanted a home death, but nearly half did not achieve this. Recognition of a preference for home death, providing the motivation to ‘stick it out’ at home, and adequate community support to provide the practical means to fulfil the preference, appear to be crucial in the achievement of a home death for all who desire it.

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.