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Biomedical subjects

J Addington-Hall

Publications and source records attributed to J Addington-Hall.

At least 37 records · Page 2Linked to original sources
PubMed1999

Extending specialist palliative care to all?

How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five potential barriers to extending specialist palliative care services to non-cancer patients in Britain. These are the skill base of current specialists in palliative care, difficulties in identifying candidates for specialist palliative care, the views of potential users of these services, resource implications and vested interests in present health service arrangements.

Clinical Competence↗
PubMed1999

Terminal cancer patients and timing of referral to palliative care: a multicenter prospective cohort study. Italian Cooperative Research Group on Palliative Medicine.

This study describes the characteristics of a representative sample of terminally ill cancer patients at admission to Italian palliative care programs, the rate and reasons for discontinuation of care, and survival after enrollment. All Italian palliative care units (PCUs) specifically committed to palliative care were asked to consecutively register all new patients (n = 3901) between January and June, 1995. Fifty-eight of the 62 PCUs contacted by the Steering Committee completed the study. A random sample of 589 evaluable patients was prospectively selected from the 2667 eligible patients. Patients were mostly referred by a general practitioner (31.2%) or a specialist (42.1%). Most patients (84.7%) were followed until death. Seventy-seven discontinued care because of hospital admission (6.6%), change of residence (3.9%), refusal (1.7%), or improvement (0.8%). Median survival was 37.9 days; 14.3% of the patients died within 7 days, and 15.3% lived longer than 180 days. A statistically significant association between survival and gender, cancer type, setting of the first visit, and type of unit was observed. In Italy, as in other countries with different health systems, referral of cancer patients to palliative care tends to occur late in the course of the disease. This study suggests that the process of enrollment and the duration of patients' survival in palliative care, when studied in large unselected populations, can provide important information relevant to the care of terminally ill patients.

Adolescent↗
PubMed1998

Which terminally ill cancer patients receive hospice in-patient care?

The objective of this study was to investigate which terminally ill cancer patients receive in-patient care in hospices and other specialist palliative care in-patient units. An interview survey was made of family or others who knew about the last year of life of a random sample of people who died in 1990. Twenty district health authorities from a range of inner city, outer urban and rural settings took part. Although self-selected, districts were nationally representative in terms of social characteristics and on many indicators of health service provision and usage. Interviews were obtained for 2074 cancer deaths out of a random sample of 2915, a 71% response rate. 342 had been admitted to a total of 31 different hospices. Using logistic regression analysis five factors were found to independently predict hospice in-patient care: having pain in the last year of life, having constipation, being dependent on others for help with activities of daily living for between one and six months before death, having breast cancer, and being under the age of 85 years. A third of patients with all five factors were admitted, compared with no patients with none of these factors. It was found that symptom severity, age, dependency level and site of cancer played a role in determining hospice admission but have limited predictive value. Admission seems to be governed more by chance than by need. Further research is needed to identify which patients benefit most from in-patient care in hospices and other specialist palliative care units as the present arrangements appear to be both inequitable and insupportable.

Adult↗
PubMed1998

Variations by age in symptoms and dependency levels experienced by people in the last year of life, as reported by surviving family, friends and officials.

OBJECTIVE: To explore the relationships between age, reported symptoms and dependency in the last year of life in those dying from cancer and in those dying from other causes. DESIGN: Secondary analysis of data from the Regional Study of Care for the Dying, a retrospective interview survey of deaths in 1990 in 20 nationally representative English health districts. There were 2061 cancer deaths and 1469 non-cancer deaths (sudden deaths were excluded). MAIN RESULTS: In cancer patients, the mean number of symptoms reported to have been experienced in the last year of life decreased with age (from 8.29 in those aged <65 to 7.79 in those aged 65 -74, 7.37 in those aged 75-84 and 7.42 in those aged 85 and older), while the number of symptoms reported to have lasted more than 6 months increased (2.93, 3.15, 3.24 and 3.52). In both cancer and non-cancer patients the proportion of symptoms reported to have been 'very distressing' decreased with age (cancer, 45, 43, 40 and 35%; non-cancer, 39, 38, 34 and 27%). In non-cancer patients the mean number of self-care tasks the deceased had needed help with increased substantially with age (2.23, 2.50, 3.04 and 3.95); in cancer patients the mean level was higher and there was no age gradient (3.89, 3.94, 3.83 and 4.1). The prevalence of dependency on most of the seven self-care tasks in cancer patients was comparable with or higher than that in the older and most restricted non-cancer patients. CONCLUSION: Younger cancer patients are more likely than older cancer patients to need help with relieving distressing symptoms. However, some elderly patients were reported to have had very distressing symptoms, and these patients should not be excluded from specialist palliative care services on the basis of their age. Cancer patients did not show increased dependency with age, indicating the importance of community health and social services being appropriate for and accessible by cancer patients of all ages.

Age Distribution↗
PubMed1998

A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with, and use of, services received in the year before death.

STUDY OBJECTIVES: To develop a short form of an interview schedule used successfully in previous national surveys of care for the dying, and to investigate the effect of administering it by post on response rate, response bias and on the nature of responses to questions. DESIGN: Randomised controlled trial. SETTING: An inner London health authority. PARTICIPANTS: Informants (person registering death) of random sample of cancer deaths between June 1995 and July 1996. MAIN RESULTS: The shortened questionnaire (VOICES) has 158 questions. Response rate did not differ significantly between postal and interview groups (interview; 56% (69 of 123), postal: 52% (161 of 308). Responders in the two groups did not differ in terms of their sociodemographic characteristics. Postal questionnaires had significantly more missing data, particularly on questions about service provision and satisfaction with services. Responses to questions differed between the groups on 11 of 158 questions. Interview group respondents were more likely to give top ranking responses to questions on service satisfaction and symptom control. CONCLUSIONS: Postal questionnaires are an acceptable alternative to interviews in retrospective post-bereavement surveys of care for the dying, at least in terms of response rate and response bias. However, the increased costs of interview surveys need to be balanced against the fact that postal questionnaires result in more missing data, and possibly less reliable answers to some questions. Caution is needed in combining results from the two data collection methods as interview respondents gave more positive answers to some questions.

Adult↗
PubMed1998

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.

Adult↗
PubMed1998

Specialist palliative care in nonmalignant disease.

The objective of this study was to investigate how many patients who die from causes other than cancer might benefit from specialist palliative care. This was achieved by secondary analysis of data from the Regional Study of Care for the Dying, a retrospective national population-based interview survey. The investigation involved 20 self-selected English health districts, nationally representative in terms of social deprivation and most aspects of health services provision. A total of 3696 patients were randomly selected from death registrations in the last quarter of 1990; an interview concerning the patient was completed 10 months after the death by bereaved family, friends or officials. The results show that a third (243/720) of cancer patients who were admitted to hospices or had domiciliary palliative care scored at or above the median on three measures of reported symptom experience in the last year of life. That is the number of symptoms (eight or more), the number of distressing symptoms (three or more) and the number of symptoms lasting more than six months (three or more). A total of 269 out of 1605 noncancer patients (16.8%) fulfilled these criteria. On this basis, it is estimated that 71,744 people who die from nonmalignant disease in England and Wales each year may require specialist palliative care. An increase of at least 79% in caseload would, therefore, be expected if specialist palliative care services were made fully available to noncancer patients. This is a conservative estimate, as non-cancer patients were matched to only one-third of cancer patients who had specialist palliative care. It is concluded that clinicians and patient groups caring for patients with advanced nonmalignant disease must work together with specialist palliative care services and with health commissioners to develop, fund and evaluate appropriate, cost-effective services which meet patient and family needs for symptom control and psychosocial support.

Female↗
PubMed1997

Awareness of dying: prevalence, causes and consequences.

Analysis of a subset of data from a survey of 3696 relatives, friends and others who knew a sample of people dying in 1990 who lived in 20 areas of the United Kingdom (the Regional Study of Care for the Dying) is reported. Using the typology of awareness contexts developed by Glaser and Strauss [(1965) Awareness of Dying, Aldine, Chicago], the prevalence of different awareness contexts is described and compared with an earlier survey done in 1969. Open awareness of dying, where both the dying person and the respondent knew that the person was dying, is the most prevalent awareness context. This is particularly so in cancer and represents a change since 1969 when closed awareness (where the respondent knows, but the dying person does not) was more common. The characteristics of those dying in open and closed awareness contexts are then compared, suggesting that having cancer, not being mentally confused, having a respondent who knew for some time that the person was dying, and being of higher social class are independently predictive of full open awareness, a condition marked both by knowledge of dying, and a value commitment towards openness. Compared with people in closed awareness, people dying in full awareness are more able to plan their dying careers, so that they and their respondents are more satisfied with the degree of choice over the place of death, they are less likely to die alone, and are more likely to die in their own homes. Additionally, these individuals are more likely to have spoken of their wishes for euthanasia, another indicator of their desire to control the manner and timing of death. If dying from cancer, people in full open awareness are more likely to have received hospice care. It is suggested that underlying these patterns, and in contrast with some other cultures where awareness of dying is seen as less desirable, people dying in Anglophone countries are particularly concerned to maintain control over projects of self-identity. Their approach to death is a reflection of this individualism.

Adult↗
PubMed1997

The effects of the clinical characteristics of dying cancer patients on informal caregivers' satisfaction with palliative care.

To assess associations between informal caregivers' satisfaction with services delivered to their dying cancer patients and their perceptions of the duration of functional limitation and the duration of various symptoms experienced by these patients, a secondary analysis was conducted on a subsample of the Regional Study of Care for the Dying (RSCD). The RSCD is a retrospective interview survey of family members or others who knew about the last year of life of a random sample of people who died in 20 health districts in the UK in 1990. The subsample consisted of 1858 informal caregivers of people who died from cancer (ICD codes 140-208). More than half (52%) of informal caregivers were highly satisfied with community nurses, compared to 39% and 35% of those who reported high satisfaction with services provided by general practitioners and hospital doctors respectively. Informal caregivers of patients who died from a lymphatic or haematopoietic tissue cancer were more likely than others to report high satisfaction with hospital doctors (47%), while least satisfaction was reported by those who cared for patients who had a neoplasm of the genito-urinary or respiratory/intrathoracic organs (30%). The duration of pain was not significantly related to any of the satisfaction measures. The results suggest the need to take patient clinical characteristics into account in population-based evaluations of palliative care. They also indicate the need for more research to be carried out to assess the reasons behind the dissatisfaction of informal caregivers of patients with respiratory or genito-urinary cancers with services provided by hospital doctors and to detect whether these patients have unmet needs that should be addressed. More research is also needed into the management of symptoms by the general practitioners, especially symptoms pertaining to respiration and incontinence.

Adult↗
PubMed1997

Carers' health status: is it associated with their evaluation of the quality of palliative care?

The associations between measures assessing bereaved carers' health status and their perceptions of the quality of palliative care delivered by community nurses, general practitioners and hospital doctors to cancer patients in their last year of life are investigated in this paper. Analysis was conducted on a sub-sample from the Regional Study of Care for the Dying (RSCD), a survey in which relatives or friends of a random sample of deaths in 1990 in 20 health districts in England were interviewed some 10 months after the death. The sub-sample consisted of 1858 carers of people who died from cancer. The results showed statistically significant associations between bereaved carers' self-rating of health status, their psychological functioning, their experience of bereavement-related health problems, and their satisfaction with services delivered by the different providers. Further research is needed, however, to explore in-depth the nature of these associations.

Attitude to Health↗
PubMed1997

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. METHODS: The study is drawn from the Regional Study of Care for the Dying, a retrospective sample survey of the carers, family members or others who knew about the last year of life of a random sample of people age 15 and over dying in the last quarter of 1990. The samples were drawn in 20 English health districts which, although self-selected, were nationally representative. There was a total of 3696 patients (response rate of 69%) dying from all causes. Within this sample, 170 dementia patients were identified and compared with 1513 cancer patients. RESULTS: The symptoms most commonly reported in the last year were mental confusion (83%), urinary incontinence (72%), pain (64%), low mood (61%), constipation (59%) and loss of appetite (57%). Dementia patients saw their GP less often than cancer patients and their respondents rated GP assistance less highly. Dementia patients needed more help at home compared with cancer patients, and received more social services; 78% of respondents for dementia patients and 64% for cancer said they had come to terms with the patient's death. CONCLUSION: Patients dying from dementia have symptoms and health care needs comparable with cancer patients. Greater attention should be given to these needs.

Aged↗
PubMed1996

Determinants of informal caregivers' satisfaction with services for dying cancer patients.

The association between bereaved informal caregivers' satisfaction with services delivered by district nurses, general practitioners and hospital doctors, and various service and non-service variables was examined to assess whether satisfaction is a reflection of service characteristics, non-service related factors, or attributable to both. Secondary analysis was undertaken on a sub-sample from the "Regional Study of Care for the Dying" (RSCD) in which bereaved relatives or friends of a random sample of deaths in 1990 in 20 health districts across England were interviewed some ten months after the death. 1858 relatives or close friends/neighbours of people who died from cancer were included in this analysis. Using multiple logistic regression, larger odds ratio were found in association with service than non-service variables. For example, high satisfaction with district nurses was strongly associated with visiting the patient very frequently (OR = 10.8, 95% CI = 4.5 - 25.9), while the GP visiting 20 times or more (OR = 5.5, 95% CI = 3.6 - 8.5), and informing the informal caregiver of the diagnosis (OR = 3.3, 95% CI = 2.3 - 4.7) were associated with high satisfaction with GPs. However, some non-service variables were significantly associated with satisfaction. For instance, having no bereavement-related psychological problems was positively associated with high satisfaction with district nurses (OR = 2.3, 95% CI = 1.6 - 3.4) and GPs (OR = 2.0, 95% CI = 1.4 - 2.8), while the informal caregiver perceiving caring as rewarding as opposed to a burden was positively associated with high satisfaction with district nurses (OR = 3.7, 95% CI = 1.8 - 7.5) and negatively associated with high satisfaction with hospital doctors (OR = 0.46, 95% CI = 0.24 - 0.86). The findings indicate that, in post-bereavement surveys evaluating services delivered to dying cancer patients, informal caregivers' satisfaction is mainly determined by service characteristics. However, attributes of both patients and informal caregivers also play an important role.

Adult↗
PubMed1996

Investigation of whether on-site general practice counsellors have an impact on psychotropic drug prescribing rates and costs.

BACKGROUND: Counselling services are now widespread within general practice. Although the cost-effectiveness of such services has yet to be fully investigated, benefits could include a reduction in prescribing of psychotropic drugs and of other drugs. AIM: A study set out to determine whether practices with counsellors differed from those without in terms of their prescribing rates and costs of psychotropic drugs. METHOD: Prescribing analyses and cost (PACT) level two data reports for the quarter to November 1991 ending January 1992, as appropriate, were sought from 354 practices with counsellors and a matched sample of 216 practices without counsellors which had participated in a previous national survey of counselling in general practice. The drug groups examined were: hypnotics and anxiolytics; antidepressants; analgesics; all central nervous system drugs; and all drugs apart from central nervous system drugs. For each group of drugs, the numbers of prescribed items, total prescribing costs, and costs per item were expressed as a proportion of the practice's number of prescribing units (that is, the age-adjusted number of registered patients) and as a percentage of the average for similar practices in its family health services authority. Practice characteristics were compared between practices with an on-site counsellor and those without. Practices with and without counsellors were compared with respect to their prescribing indicators. RESULTS: PACT reports were obtained from 214 practices (response rate 38%)--126 with counsellors and 88 without. Practices with counsellors and practices without counsellors were well matched in terms of location, list size, proportion of elderly patients, training and fundholding status, and number of health promotion clinics. No significant differences were found between practices with and without counsellors in the prescribing indicators for any group of psychotropic drugs examined or for central nervous system drugs as a whole. CONCLUSION: There were no appreciable differences found in this study between practices with and without counsellors in terms of psychotropic drug prescribing rates or costs. The reasons for this are unclear; more indepth studies of individual counselling services are required.

Counseling↗
PubMed1996

The role of counsellors in general practice. A qualitative study.

Counselling services in general practice are now widespread but little is known about their nature or role. We therefore carried out in-depth telephone interviews with a representative sample of 72 general practitioners and 60 of their counsellors who had participated in a previous national survey of counselling services in England and Wales. Our aim was to gain greater insight into the functioning of these services in order to determine the most appropriate focus for future research and development. Interviews were semi-structured and focused on service initiation and duration; counsellors' background and training; working arrangements including sources of funding; types of clients; communication between general practitioners and counsellors; perceived advantages and disadvantages to general practitioners, counsellors, and clients; goals, barriers, and proposed changes. Approximately two thirds of counsellors were employed by district health authorities and attached to practices. One third were employed by the practice with the financial assistance of family health services authorities. Practice-employed counsellors appeared a relatively new service innovation whose growth was facilitated by the general practitioner contract of 1991. Practice-employed counsellors were preferred to practice-attached staff in that general practitioners had greater control over the selection of counsellors and their working arrangements. Problems with interprofessional communication were noted in relation to counsellors' wishes to maintain patient confidentiality by not exchanging information about patients with general practitioners. Counsellors received referrals principally from general practitioners and occasionally from other primary health care staff. Self-referral by patients was rare. The problems for which patients were most commonly referred were: stress/anxiety, relationship problems, depression, and bereavement. The principal therapeutic styles were Rogerian counselling, behavioural therapy, and psychodynamic psychotherapy. A quarter described their style as 'eclectic'. Individual, not group, therapy was the norm. Sessions were usually 50 minutes in duration. However, waiting list times, the frequency of sessions, and overall duration of therapy varied enormously. Overall 28% of counsellors held no formal qualification in counselling or in any of the psychotherapies. Counsellors and general practitioners were generally satisfied with the service and identified a wide range of benefits with few disadvantages. The principal problem was said to be that demand exceeded capacity and the principal change proposed was expansion of the service. The findings provide the most comprehensive account to date of the present state and likely future direction of counselling services in general practice and point to the need to: 1. Evaluate the cost-effectiveness of counselling in the management of common psychiatric disorders such as anxiety and depression 2. Establish a national policy for the training and accreditation of counsellors working in general practice settings 3. Educate general practitioners about the organization and role of counselling services with particular attention to interprofessional communication and the maintenance of patient confidentiality.

Attitude of Health Personnel↗
PubMed1995

Euthanasia: the role of good care.

The results from two surveys in England of relatives and others who knew people in samples drawn from death certificates are reported. The main focus is on a sample of 3696 people dying in 1990 in 20 health authorities, with supporting analysis from an earlier national sample of 639 people dying in 1987. The argument that good care and, in particular, hospice care is effective in reducing the desire for euthanasia has been proposed as an argument against the legalization of voluntary euthanasia. The findings suggest that the picture is in fact more complex. People who received hospice care were, if anything, more likely to have respondents who felt that it would have been better if they had died earlier. The latter held when controlling for other variables found to influence respondents' views, such as the level of distress and dependency experienced by the dying person. It appears possible that the same may apply to the dying peoples' own wishes, although here the time order of events could not be controlled for in the data. It is suggested that this may be due to hospice care being geared to helping patients express their fears and exercise choice. The wish for euthanasia may then be an assertion of personal control, rather than an act of surrender. Alternatively, people (and their relatives) who accept hospice care may be predisposed to consider the benefits of an earlier death.(ABSTRACT TRUNCATED AT 250 WORDS)

Attitude to Death↗
PubMed1995

Dying at the best time.

These are the results of two surveys of relatives, and others who knew people who had died, describing events in the year before death and their views on the time of the person's death. Those surveyed were identified from death certificates in England. The main focus is on a sample of 3696 people dying in 1990 in 20 health authorities, with supporting analysis from an earlier national sample of 639 people dying in 1987. Variation in peoples' views about whether an earlier death would have been better is reported, in the context of debate about euthanasia. Spouses were less likely than others to feel that it would have been better if the person had died earlier, and this held true even when controlling for the deceaseds' levels of pain, distress, dependency and age. Spouses were more likely than others to say that a later death would have been better, though not in cases where the deceased was reported as having said they wanted to die sooner. Spouses were influenced by the loss which the death of the person represented for them, being more likely than others to say they missed the person who died a great deal, and feel loneliness was a big problem. Non spouses (children and other relatives of the deceased, friends, neighbours and a few officials) on the other hand were more likely than spouses to say an earlier death would have been better, even when levels of pain, distress, dependency and age were controlled for.(ABSTRACT TRUNCATED AT 250 WORDS)

Adult↗