The emotions and coping strategies of caregivers of family members with a terminal cancer.

This study documents the emotional experiences and coping strategies of a group of caregivers as they move from the diagnosis of a close family member with terminal cancer through the stages of caring and post bereavement. Supportive evidence, matching that of previous literature, was gathered regarding the impact of such care, but additional findings counter the notion of "burden" by revealing that strong positive emotions were experienced by these caregivers regarding the opportunity given to them to express their love through care. By contrast and post bereavement, however, intense grief was reported. There appeared to be a complete lack of emotional support throughout from health professionals, particularly in the bereavement phase when need is very apparent.

The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy.

OBJECTIVE: This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families. METHODOLOGY: Semistructured interviews were conducted in South Australia with nine bereaved and four current family members of individuals with muscular dystrophy or spinal muscular atrophy. Issues explored during interview included: (i) the family perceptions of the difficulties in caring; (ii) the psychological and physical resources which were available to assist them; and (iii) family recall of the management of the terminal phase of the illness. RESULTS: Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support for siblings; (iii) inadequate bereavement care; and (iv) limited discussion of options of ventilatory support and advance directives. CONCLUSIONS: The terminal care for individuals with muscular dystrophy and spinal muscular atrophy and their families requires improvement. Although many individuals with these conditions will die following an acute event, palliative care services may be appropriate for those who require a period of terminal care at home.

The impact of a computer generated patient held health record.

OBJECTIVE: To examine the use and impact of a computer generated, patient held health record (PHR) on information sharing, responsibility sharing and preventive health care. SETTING: An academic group, private solo and private group general practice in Adelaide, South Australia. METHODS: Patients with chronic health problem(s) were randomly assigned to an experimental control or post test only group. Pre and post intervention data were collected using a standardised audit and abstraction of the patient records into a computer based record system. In addition, patient and doctor questionnaires, telephone follow ups and face to face interviews were conducted. OUTCOME MEASURES: Patient and GP use of, and satisfaction with the PHR; effectiveness of information and responsibility sharing; and uptake and performance of selected preventive health care by patient and GP. RESULTS: Seventy-two patients were recruited (29 received the PHR, and 22 each were in the control and post test only groups). The PHR was well received and used in both primary and secondary care settings. No statistically significant differences in the outcome measures were found between the groups as well as before and after the intervention (Kruskal-Wallis, p > 0.05). Data trends suggested that the PHR may increase information and responsibility sharing as well as improve patient awareness of the issues involved, with patient participation in information sharing, preventive health care and clinical decision making. Provided training and resources were made available, participating GPs believed that the computer based methodology developed was a practical option for use in practice. CONCLUSION: The computer generated PHR is an important determinant of patient participation in information and responsibility sharing, health promotion, and disease management. Implementation and evaluation studies are recommended.

Attenuation of morphine-induced delirium in palliative care by substitution with infusion of oxycodone.

We have observed among patients of the Southern Community Hospice Programme that up to 25% experience acute delirium when treated with morphine and improve when the opioid is changed to oxycodone or fentanyl. This study aimed to confirm by a prospective trial that oxycodone produces less delirium than morphine in such patients. Oxycodone was administered by a continuous subcutaneous infusion, as this allowed more flexible and reliable dosing, and patients were monitored for any adverse reactions to the drug. Thirteen patients completed the study. Statistically significant improvements in mental state and nausea and vomiting occurred following a change from morphine to oxycodone. Pain scores improved but did not reach a level of statistical significance. The phenotype status of the patients was tested to establish their capacity to metabolize oxycodone. One patient who did not achieve adequate pain control proved to be a poor metabolizer. These results show that oxycodone administered by the subcutaneous route can provide effective analgesia without significant side effects in patients with morphine-induced delirium. This treatment allows patients to remain more comfortable and lucid in their final days. A small proportion of patients who do not metabolize oxycodone effectively may not receive this benefit.

Evolution of the Physicians' Peace Movement: A Historical Perspective.

Historically, physicians have chosen to consider medical ethics rather than patient rights, as well as preferring responsibility for the individuals seeking their help rather than for the health of populations. Protests against planning for war, and discussions about sustainment of global well-being, were received within the medical profession with both encouragement and hostility. Against the mounting threat of nuclear war, International Physicians for Prevention of Nuclear War (IPPNW) was created, bringing up to 70 national affiliates together into a global federation which spoke with a single voice to oppose the grim reality of nuclear war. IPPNW sought to concentrate its concerns on collective issues rather than individual rights, and on changing ways of thinking rather than on saving individual lives. To this end it has enlarged its agenda to the establishment of more equitable distribution of resources, protection of the global environment, and non-military ways of building regional and global security. IPPNW seeks to promote rights through discussion, education, and non-partisan collective advocacy and consensus-building. This paper traces the evolution of medical groups that formed to promote peace and prevent war.

Plasma concentrations of fentanyl with subcutaneous infusion in palliative care patients.

1. Plasma concentrations of fentanyl were measured by g.c. in 20 patients (median age: 75 years and range: 54-86 years; eight females) in palliative care receiving the drug by continuous s.c. infusion (median rate: 1200 micrograms day-1 and range: 100-5000 micrograms day-1). 2. The infusion rate was significantly related to the duration of therapy (Spearman rho = 0.56, P < 0.05). The total steady-state plasma concentrations of fentanyl ranged between 0.1 and 9 ng ml-1, with a median of 1 ng ml-1. The unbound fraction of fentanyl in the plasma ranged from 17.8 to 44.4%, with a median value of 33.6%. Infusion rates and both total and unbound plasma concentrations of fentanyl were correlated (Spearman rho = 0.92, P < 0.05 in each case). Even with standardization for dosage, there was an eightfold variation in total plasma concentrations and 3.5-fold variation in unbound plasma concentrations of fentanyl. 3. There is considerable inter-patient variability in the pharmacokinetics of fentanyl with s.c. infusion in the palliative care setting, which necessitates careful titration of dosage according to individual clinical response.

Quality of life issues in patients dying from haematological diseases.

Patients with haematological diseases do not have ready access to hospice services in South Australia. They remain in close contact with a specialist haematology or oncology unit, and are more likely than are patients with solid tumours to receive intensive therapy during a terminal admission. The course of the final month of life was compared for three groups of patients suffering from colorectal cancer, non-Hodgkins lymphoma and acute leukaemia by a review of hospital records. All leukaemia patients died in hospital and few received a palliative care consultation. Measures of symptom control and quality of life are not recorded for these patients. It seems probable that adults with acute leukaemia will continue to die in hospital. Some of the lessons learnt from hospice practice may be appropriately applied in hospital for those patients.

'Good palliative care' orders.

A Select Committee of the Parliament of South Australia, considering revisions to legislation governing care of the dying, did not support allowing doctors to assist suicide. They recommended that no liability attach to the provision of reasonable palliative care which happens to shorten life. The Committee affirmed the suggestion that positive open orders to provide 'good palliative care' should replace 'do not resuscitate' orders.

Ethics in aboriginal research. A model for minorities or for all?

Guidelines for research among Aborigines and Torres Strait Islanders were approved by the National Health and Medical Research Council (NHMRC) in 1991. The recommendations seem more stringent than those previously published by the NHMRC for medical research in general. Several States independently have proposed or promulgated similar guidelines for Aboriginal research. This paper indicates the themes common to such guidelines and how they seek both to redress past faults and to encourage a greater participation and authority by Aboriginal communities when research is conducted among them. It is suggested that the guidelines raise questions about the control of research and the role of consumer groups that are of far-reaching importance to medicine.

The community care of terminally ill patients.

The authors outline the results of a survey, through interviews or posted questionnaires, of 122 Adelaide general practitioners. General practitioners shared or handed over most aspects of terminal care, particularly the spiritual and social aspects. Comprehensive care for these patients is directly related to the general experience of the general practitioners. The need for improved undergraduate and postgraduate education in terminal illness is stressed.