Palliative Medicine

Family caregivers, who are patientsflrelatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory. What evidence there is suggests that while some aspects of caring are looked on positively, carers also experience challenges in maintaining their physical and psychological health and their social and financial wellbeing. One common recommendation is that respite facilities be provided. The purpose of this paper is to consider the definitions and assumptions that underpin the term ’respitefland its impact on the physical, psychological and social outcomes of carers in palliative care contexts. We conducted a review of the literature, which involved searching five electronic databases: Web of Science, Medline, CINHAHL, Cochrane Database System Review and Social Sciences Citation Index. The search identified 260 papers, of which 28 related directly to adult respite care in specialist palliative care. These papers were largely concerned with descriptive accounts of respite programmes, guidance on referral criteria to respite services or were evaluating the effects of respite on the patient rather than the impact on the carer. We did not identify any empirical studies assessing the effects of respite provided by specialist palliative care services on carer outcomes. There is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease. We, therefore, draw on the wider literature on carers of adults with chronic disease to consider the impact of respite services and offer suggestions for further research.

The analgesic effectiveness and adverse effect incidence of a daily dose of 10 or 20 mg of oral methadone were evaluated in 18 patients with a diverse range of chronic neuropathic pain syndromes, who had all responded poorly to traditional analgesic regimens. Analgesia was seen after each dose of methadone. As compared with placebo, the 20 mg daily dose (given as 10 mg bd) resulted in statistically significant (P=0.013–0.020) improvements in patient Visual Analogue Scale ratings of maximum pain intensity, average pain intensity and pain relief, recorded at the same time daily. The analgesic effects extended over 48 hours, as shown by statistically significant (P=0.013–0.020) improvements in all three outcomes on the rest days instituted between each daily dose. Analgesic effects (lowered maximum pain intensity and increased pain relief, on the day of dosing only) were also seen when the lower daily dose of 10 mg methadone (given as 5 mg bd) was used, but these failed to reach statistical significance (P=0.064 and 0.065, respectively). Interpatient analysis showed that the analgesic effects were not restricted to any particular type of neuropathic pain. Patient compliance was high throughout the trial. One patient withdrew during the 10 mg and six during the 20 mg methadone treatment periods. This is the first double-blind randomized controlled trial to demonstrate that methadone has an analgesic effect in neuropathic pain.

This study aimed to define and prioritize the need for specialist palliative care (SPC) in cancer outpatient clinics. A validated assessment tool, the Symptoms and Concerns Checklist, was used to determine the prevalence and severity of symptoms and concerns. The checklist was completed by 480 outpatients with a cancer diagnosis. Sixty patients from each of eight primary tumour groups (lung, breast, gastrointestinal, gynaecological, urological, head and neck, brain and lymphoma) were recruited. The majority of patients (over 90%) rated 27 of the 29 checklist items, reporting a mean of 10 items as current problems. The influences of disease site and status, demographic factors and treatment on the number and type of symptoms and concerns reported were investigated. The highest number of symptoms and concerns and most severe problems were reported by patients with lung cancer, followed by those with brain tumours; the lowest by those with lymphoma and urological tumours. A high proportion of patients (83%) reported one or more items likely to benefit from SPC intervention. The results of this study suggest an extensive need for better symptom control in all cancer outpatients and in centres where SPC resources are limited, priority could be given to patients attending lung and brain tumour clinics.

Objective: A prospective cohort study evaluated the performance and acceptability of the cognitive based Mood Evaluation Questionnaire (MEQ) in assessing depressive symptoms over time in patients with advanced cancer. The structured clinical interview for DSM-III-R (SCID) and the single-item interview screening question were also administered.

Method: Forty-five advanced cancer patients were followed monthly for up to six interviews (108 interviews in total).

Results: The MEQ and SCID had moderate agreement (weighted kappa 0.52 over all interviews). At first interview, 26 (58%) patients were depressed using MEQ, seven (16%) of these severely. Attrition rates were high for subsequent interviews. The assessment process was considered positive by 92% patients, and acceptable as a single and repeat measure. Positive responses to MEQ questions about worthlessness, death and self-harm were strong predictors of current depressed mood.

Conclusion: The MEQ has potential as a useful alternative to SCID in assessing depressive symptoms in a palliative care population, and can be used by nonpsychiatric trained professionals. It is positively received by patients and acceptable as a repeat measure. Most patients appreciate being asked about their mood in depth, including questions around death and self harm.

Objective: To survey changes in depressive symptoms over time in patients with advanced cancer using the Mood Evaluation Questionnaire (MEQ), and explore how effective Palliative Care Professionals (PCPs) are at assessing this.

Method: Forty-five advanced cancer patients were followed monthly for up to six interviews (108 interviews in total). Selected clinical variables were recorded.

Results: At first interview, 26 (58%) patients were depressed using MEQ, seven (16%) severely. Attrition rates were high, with 28, 13, nine, seven and six patients available for subsequent interviews. A > 12-point increase in MEQ over sequential interviews was associated with reduced survival (Hazard ratio 3.2, CI 1.2–8.4). PCPs recognized depressed mood, but underdiagnosed severe depression in 9% of patients (CI 3–16%, P = 0.002). A past history of depression was a strong indicator of current depressed mood on the MEQ.

Conclusion: Change in depressive symptoms over time is related to mortality in this patient cohort, patients with marked deterioration in mood dying earlier. PCPs usually recognize patients' depression but underestimate the severity of depressed mood.

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 ’Frameworkflapproach. 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.

Background: Palliative care is an integral part of the general practitioner's role and palliative care teaching and training should be available for GP registrars during vocational training. Aim: This study was carried out to evaluate the content, amount and nature of generic palliative care teaching during vocational training in the UK. Method: A postal questionnaire survey of all course organizers enquired as to whether palliative care teaching was included in the core training sessions; professional background of the teachers; teaching methods used; whether the local hospice was used as a resource and whether GP registrars were able to choose a post in a hospice within their training scheme. Results: Three hundred and seventy-seven questionnaires were distributed and 240 were returned completed – a 64% response rate. A total of nine one-year schemes replied that they did not include any teaching in palliative care – the median amount of teaching given for one-year schemes was 4.75 hours and nine hours for the three-year schemes. Statistically significant diferences were found in teaching on psychosocial issues and bereavement between one and three-year schemes. Less than half of all schemes included teaching on financial issues related to palliative care. Several schemes cited difficulties in accessing hospice placements and in accessing hospice medical staff to provide teaching. Conclusion: There is wide disparity in both the amount and content of teaching about palliative care within UK vocational training schemes. Difficulty in accessing placements within hospices and in accessing staff from such units to undertake teaching may be a barrier to effective and comprehensive palliative care teaching for doctors working in primary care. We suggest that a national generic curriculum of palliative care within primary care be implemented.

The objective of this study was to evaluate the impact of the Macmillan GP Facilitator Programme in Palliative Care on the knowledge, attitudes and confidence in symptom control of general practitioners (GPs), communication with patients and out-of-hours practice. GP Facilitators work on average for two sessions a week with practices in their locality. The design included a before and after study, with geographical controls matched on type of area (inner city, urban and rural) and broadly on Jarman scores using postal questionnaires sent to GPs. Scores measured change in GP awareness, attitudes and practice over two years of the intervention, derived from Likert scale responses to the postal questionnaires. Although overall few significant results were found, we did identify an increase in the use of palliative care guidelines in Facilitator districts, together with an increase in awareness of day care. The programme was associated with increased positive attitudes towards specialist palliative care services and results suggested increased satisfaction with out-of-hours services for patients. No change was found for confidence in symptom control and communication over diagnosis with cancer patients was less than in control districts. The design also incorporated a qualitative component, and from this we found the Facilitator programme to be popular with local GPs who valued the support of a colleague who knew the demands and constraints of general practice. In conclusion, we have demonstrated an impact of the GP Facilitator programme on GP awareness of, use and increased positive attitudes towards specialist palliative care services. By improving communication between primary and specialist palliative care, the programme should contribute substantially to improved care of the dying at home.

Aim: To describe the cost of palliative day care (PDC), assessing the value of all resources whether paid for or not. To examine different patterns of resource use resulting from attending PDC.

Methods: Five PDC centres in southern England provided detailed cost and resource use data, both paid and unpaid for. The PDC group were consecutive new referrals to a PDC centre who were well enough to be interviewed. The comparison group were recruited from home care teams. Data were collected at baseline, six to eight weeks and 12–15 weeks, on health and social care utilization in the month prior to interview. Data were divided into cohorts based on time from first interview to death and analysed separately.

Main outcomes: Annual cost of running a day care centre, and cost per patient per day. Use of all health and social care resources over time, stratified by time from death. Comparison of health and social care by stage of illness, and by PDC attendance.

Results: PDC cost around £54 per person per day in 1999, rising to £75 including unpaid resources. 145 patients had data on health and social care use. The patterns of care showed that, overall, patients accessed few services other than PDC. Comparison group patients did not access similar services elsewhere. PDC might substitute home nursing and GP care for patients who attend PDC at least three months before death but this data is not conclusive. Inpatient care was negligible for both groups.

Conclusions: A full economic evaluation could not be undertaken without robust evidence of the effectiveness of PDC. PDC centres made use of resources that were not paid for and shared resources with inpatient units, reducing costs. Service use was different for patients who attended compared with patients who did not. Similar services were not accessed elsewhere in the community; PDC does not appear to replicate other services for this group of patients.

Paraneoplastic encephalomyelitis (PEM) is a form of neurological dysfunction caused by the remote effect of small cell lung cancer (SCLC) on the brain. In certain cases it is associated with the presence of Anti-Hu antibodies. Up to 65% of patients with SCLC and PEM, who have Anti-Hu antibodies present, die of neurological complications rather than tumour progression. Chemotherapy is not believed to be beneficial. We describe a 58-year-old lady who was bed-bound and significantly disabled from paraneoplastic cerebellar degeneration. Her serology confirmed the presence of Anti-Hu antibodies and SCLC was confirmed at bronchoscopy. Following six courses of chemotherapy her neurological symptoms have remarkably improved, both subjectively and objectively, such that she is now independently mobile with a walking frame. Her tumour is still evident on bronchoscopy. We suggest that people with SCLC who are significantly disabled by neurological symptoms, should be tested for serum anti-neuronal antibodies and if Anti-Hu antibody positive, anti-neoplastic treatment should be considered despite poor performance status.