Palliative Medicine

To compare the quality of inpatient care for dying people in St Christopher's Hospice, London and nearby hospitals in 1994 and make comparisons with earlier studies of the same setting, interviews were undertaken with spouses of people who had died from cancer in these settings, matched by age and sex.

The subjects comprised 66 people who had died in 1994, 33 of whom had died in the hospice, 33 in local hospitals. The mean age was 70.2, 61 % were male.

The hospice group were more likely to know that they were dying and less likely to be admitted as emergencies. Treatment for pain, breathlessness and nausea from both sources provided relief in almost all cases. Most information about the illness was given by hospital doctors before hospice care occurred. Where it occurred, communication by hospice staff was judged better than that by hospital doctors. Staff in hospitals were more likely to be judged 'very busy'. Hospice respondents were less likely to want improvements, and more likely to judge the institution as being 'like a family'. Earlier studies had shown a trend for symptom control to have improved in hospitals but for difference in the psychosocial climate to favour the hospice. By 1994, this latter difference was still obtained.

We stress the role of hospital staff and general practitioners in helping patients accept a terminal prognosis, so that better-planned care can proceed. The busy public atmosphere of some hospital wards may not be conducive to the good care of dying people.

To compare the quality of care for spouses of dying people in St Christopher's Hospice, London and nearby hospitals in 1994 and to make comparisons with earlier studies of the same setting, interviews were undertaken with spouses of people who had died from cancer in these settings, matched by the deceased's age and sex.

The subjects comprised 66 people whose spouses had died in 1994, 33 of whom had died in the hospice, 33 in local hospitals. The mean age was 69.3; 61 % were female.

No significant differences between groups were found on the outcome measures (adjustment to bereavement, anxiety and psychosomatic symptoms at the time of the final admission), largely replicating earlier studies in the same setting. In various respects hospitals have moved closer to hospice practice: in contrast to earlier studies, there were no differences in visiting patterns or in spouses helping with inpatient care. Bereavement follow-up is now initiated in some cases by hospitals. Liberal visiting hours could be stressful, however, and spouses sometimes helped with care to remedy staff shortcomings. Regret at not being present at the death was more common in the hospital group.

Bereavement interventions may have more effect on subsequent adjustment if targeted on high-risk individuals. Other benefits than adjustment, however, may be achievable. Steps to create a calm atmosphere on hospital wards where people can be with their relatives near the time of death are desirable.

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.

The objective was to study attitudes and views of primary care professionals towards terminally ill cancer patients who die at home, using a cross- sectional study based in the health district of Manresa (province of Barcelona, Catalonia, Spain) of the Catalan Health Service, involving 151 primary health care professionals (87 physicians and 64 nurses).

By using a self-responded anonymous questionnaire (response rate 89%) it was found that despite excellent motivation, primary care professionals reported widespread frustration and a poor opinion of the quality of care provided to terminally ill cancer patients. Attitudes and views clearly differ by age, sex and geographic setting. In the study area, most professionals are reluctant to disclose the diagnosis of cancer, and this attitude is associated with a more favourable assessment of the support provided to the family. The idea that the most appropriate place of death is at home is strongly linked to the belief that patients ought to be informed of their illness, to feelings of frustration and to youth. These findings further substantiate the need and the potential for ample changes in terminal cancer care in Spain.

Delirium is a frequently encountered clinical condition in palliative medicine, but it is often unrecognized and misdiagnosed. The cardinal sign of delirium is that of impaired consciousness. Writing skills are reported to be a delicate indicator of consciousness impairment, and a too infrequently utilized clinical sign of delirium. Ten delirious hospice patients completed the Frenchay Aphasia Screening Test which showed that writing was the most impaired of the language dysfunctions assessed. The simple clinical task of a request to write 'name and address' revealed overt dysgraphic errors among delirious patients. This examination is clinically acceptable to hospice practice and may be an adequate and accurate bedside test of delirium.

For children with incurable life-threatening diseases, social reintegration is an illusion. Schooling for these children is both possible and desirable, but its specific objectives must be adapted.

The educational career of 30 French school children with incurable cancer was followed. Data concerning the children's degree of motivation to attend school and its evolution during the course of the disease as well as the measures adopted to maintain school attendance were analysed.

Sixty per cent of the children demonstrated a genuine desire to attend school until the advanced stages of their disease. Reading, mathematics and computer work were their favourite subjects. Increasing physical disability and fatigue diminished their motivation over time. Refusal to attend school occurred in 40% of the children, who had either extracurricular interests or poorly controlled pain.

School attendance for the terminally ill child is part of palliative care and has specific medical and educational goals. As such, its objectives are quite distinct from those of other educational reintegration projects proposed for children with cancer.

This study examines how frequently and for what indications sedatives are prescribed in a hospital support team and in a hospice. We also looked at the survival of sedated patients from the date of admission and from the start of sedation.

Overall 26% of patients were prescribed sedatives in order to sedate them (31 % at the hospice and 21 % at the hospital) and 43% of patients were given sedatives for symptom control (67% at the hospice and 21 % at the hospital). Sedated patients survived for a mean of 1.3 days after the start of sedation, and there was no detectable difference in survival from the date of admission between sedated and nonsedated patients.

This study explores the changing characteristics of patients admitted to Sir Michael Sobell House, Oxford, between 1978-89. These dates represent the period between the first available records and the first computerized records. Analysis is between these dates and has been undertaken to enable future comparison between the early life of the unit with more recent developments. Using secondary sources the following areas were compared statistically: information related to general characteristics such as sex and age; information related to referral such as the number of referrals; diagnosis on referral and reasons for referral; information related to problems presented and place of death. Significant findings included an increase in referrals and patient survival; an increase in patients dying at home; a decrease in symptoms presented on referral and fewer referrals for terminal care; and an increase in referral for rehabilitation, assessment and support. Reasons for these changes are suggested.

To delineate the demographic features and clinical profile of male and female individuals utilizing a respite, rehabilitation and hospice centre in London, a retrospective study of patient notes was undertaken. The subjects were 59 male and 59 female HIV patients at first admission to the hospice.

The study revealed clinically important differences between men and women and also identified special problems for African women and intravenous drug users. Women experienced more constipation, headache and musculoskeletal pain than men. Men suffered more neuropathic pain and visual loss. Lower respiratory tract infections were more common in women, especially in those with a history of injection drug use. Gynaecological morbidity was common. There was no difference in AIDS diagnoses between men and women. HIV encephalopathy developed in 23% of the cohort during the follow-up period which has implications for provider units.

There are increasing numbers of HIV-positive women and injection drug users being referred for palliative care services. Multidisciplinary teams should be aware of the particular symptom profile of these groups.