Palliative Medicine

Selecting an appropriate research strategy is key to ensuring that research questions are addressed in a way which has value and is congruent with the overall topic, questions and purpose of the research. This paper will argue that there are situations when a case study strategy is appropriate to use in palliative care research. These include: when complex situations need to be addressed; when context is central to the study; when multiple perspectives need to be recognized; when the design needs to be flexible; when the research needs to be congruent with clinical practice; when there is no strong theory to which to appeal; and when other methodologies could be difficult to conduct. Using case study strategies rigorously and appropriately can contribute to knowledge in a way which is sensitive to the complex, context-dependent and multiprofessional nature of palliative care.

Background: When the Oregon Death with Dignity Act (ODDA) legalizing physician assisted suicide was enacted into law in 1997, Oregon hospice clinicians were uncertain how involved they would be with patients who wanted this option. However, 86% of the 171 persons in Oregon who have died by lethal prescription were enrolled in hospice programmes. Method: A mailed questionnaire was sent to all hospice nurses and social workers in Oregon in 2001 (n = 573) to assess their attitudes about legalized assisted suicide and interactions with patients concerning this issue. Responses from 306 nurses and 85 social workers are included in this report. Findings: Almost two-thirds of respondents reported that at least one patient had discussed assisted suicide as a potential option in the past year. Social workers were generally more supportive of both the ODDA and of patients choosing assisted suicide compared to nurses. Twenty-two per cent of all respondents were not comfortable discussing assisted suicide with patients. Ninety-five per cent of both groups, however, favoured hospice policies that would allow a patient to choose assisted suicide while enrolled in hospice and allow hospice clinicians to continue to provide care. Interpretations: Nurses and social workers in hospices and other settings can expect to encounter patient questions about physician-assisted suicide, whether legalized or not, and must be prepared to have these discussions. Most hospice professionals in Oregon do not believe that assisted suicide and hospice enrolment are mutually exclusive alternatives.

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7–14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands.

Sixty-six patients with cancer-related pain entered an open multicentre study to examine the safety and efficacy of oral transmucosal fentanyl citrate (OTFC) in the treatment of breakthrough pain. Patients were eligible for the study if they were stabilized on a long acting opioid but were experiencing up to four episodes of breakthrough pain a day and achieving at least partial relief from breakthrough pain using conventional medication (normal release oral morphine in the majority of patients). The efficacy of the conventional medication was documented in a run-in phase and patients then changed to OTFC. All patients were treated initially with a 200 mcg unit of OTFC and the dose was increased if necessary to a level that produced relief of breakthrough pain without troublesome adverse effects. Fifty-eight patients completed the run-in phase using their usual medication and entered the dose titration phase with OTFC and 57 patients received at least one dose of OTFC. Forty-two patients (72%) found a successful dose of OTFC. The primary outcome measures were the Summed Pain Intensity Differences (SPID) and Total Pain Relief (TOTPAR) scores at 60 min. There was a significant difference in both measures in favour of OTFC compared with conventional medication in these patients. Twenty-eight of the 42 patients (67%) preferred OTFC to their usual medication. The most common adverse effects attributed to OTFC were nausea, stomatitis, vomiting and dizziness but there were no unpredicted or severe problems. Thirty-seven patients continued into the long-term study and 12 of these completed six months treatment. Most drop-outs in this phase were associated with progression of the underlying disease. No patient stopped using OTFC because of dissatisfaction with the drug. OTFC appears to be a safe and effective treatment for breakthrough pain in cancer patients and may have advantages over currently available opioid formulations.

There is a major deficiency in the end-of-life care offered to patients dying in the intensive care unit (ICU). Hypothesis: Hospitalized dying patients had informed discussions on endof-life and palliative care options before admission to ICU. Patients and methods: A descriptive non-interventional study was performed at a teaching hospital to examine if patients who died in hospital had informed discussions on end-of-life care before admission to ICU. The impact of these discussions on subsequent patient care: aggressive therapy in the ICU, the quality of palliation, use of hospice care services and utilization of hospital resources were examined. Data were collected from medical records for all hospital deaths over 24 months. Results: Of 252 hospital deaths, 196 (78%) were treated and subsequently 165 (65%) died in the ICU. Patients treated either in the ICU or general hospital wards had similar frequency of ultimately or rapidly fatal pre-existing disease (47% versus 62%, P: ns) and readmission to hospital within one year before death (43% versus 57%, P, ns). The median age (10-90% percentile) was slightly younger for the ICU than hospital wards patients: 73 (45-85) versus 76 (55-91) years, PB / 0.01. Of the 156 patients who were transferred to ICU from hospital wards: 136 (87%) were managed by house staff on teaching services and 20 (13%) were managed by attending staff hospitalists, PB ^/ 0.01. None of those transferred to the ICU who subsequently died had discussion of palliation or end-of-life care as an alternative treatment. Of those who died who were treated on general wards, 14 (25%) patients had discussion of palliation as an alternative treatment option before death. Do-not-resuscitate decisions were made in 48% of cases two days before death. Patients who were treated in the ICU had more invasive tests performed on them and were less likely to have adequate pain control or referral to hospice care services than on a general ward. Median hospital charge was much higher for patients who received ICU versus general ward care ($33 252 versus $8549, PB ^/ 0.001). Conclusions: Patients who died in the ICU did not have informed discussions of end-of-life or palliative care as an alternative treatment option before admission. The quality of end-of-life care was disrupted for patients with fatal pre-existing chronic disease who were admitted to the ICU before death. Lack of clinical experience, knowledge and competency with end-of-life care influenced admission of patients to ICU regardless of poor prognosis. Decisions regarding the pursuit of aggressive therapy versus palliative care must be addressed with patients by physicians who are competent and experienced in end-of-life care as this will have a profound impact on both the quality of care delivered and effective use of limited hospital resources.

Depression and symptom severity are predictive of survival in cancer patients, but are often correlated with each other. This paper compares the physical symptom profiles of depressed and nondepressed cancer patients and further examines the predictive ability of multiple symptoms on depressive status. Data were collected from 121 hospitalized patients with breast, oesophageal and head and neck cancer. Patients were categorized as depressed (n =30) or nondepressed (n =91) using the Hospital Anxiety and Depression Scale. Occurrence of symptoms was evaluated with the Patient Disease Symptom/Sign Assessment Scale. The most prevalent symptom in the total sample was insomnia (occurrence rate=67%). Insomnia, pain, anorexia, fatigue, and wound or pressure sore occurred significantly more often in depressed patients, with no difference in occurrence rates of nausea/vomiting and dyspnoea. Significantly more symptoms were observed in depressed than in nondepressed patients (mean=3.77 versus 2.52). Both groups showed similar rankings of symptom occurrence rates. Patients simultaneously experiencing insomnia, pain, anorexia and fatigue had a higher risk of depression (odds ratio=5.03).

Although the importance of specialist palliative care in home care programmes for terminally ill patients is well known, German community hospice services did not begin to employ nurses who had specialized in palliative care until the early 1990s. The general tasks of these nurses are sufficiently well defined, but no comprehensive data of their daily workload are available in Germany to date. The present article examines time expenditure in direct patient-related care at the community-based hospice service in Mainz, Germany, by analysing time registration sheets concerning 351 patients who received care from January 2000 until December 2002. Fifty-five per cent of care time spent on each individual patient was in direct contact with that patient and/or his or her relatives, 20% of the time was spent on networking and other related tasks, 17% on travelling and 8% on bereavement counselling. Activities in direct patient contact were allotted to pain and symptom control (36.4%) and psychosocial support of the patient (32.4%) or his or her relatives (27.1%), whereas nursing issues played a minor role (4%).

Objectives: To identify and explore the educational needs of children's hospice doctors in England. Design: A descriptive quantitative and qualitative survey. Setting: Children's hospices in England. Participants: All children's hospice doctors (n=55) in England were approached, and 35 (65%) consented. Interventions: A questionnaire designed to survey doctors' self-assessed educational competencies (confidence and perceived need for training) in subject areas derived from analysis of existing children's palliative care literature. Educational diaries used prospectively in practice to identify areas of unmet educational need. Main outcome measures: Self-perceived confidence and usefulness scores for each subject area. An analysis of support, education and training needs deriving from educational diaries and one-to-one interviews. Results: Confidence and usefulness scores suggest that respondents would most value support, education and training in the management of emergencies, symptoms and physical disease. Educational diary analysis revealed that respondents would most value support, education and training in communication skills, team-working skills, and personal coping strategies. Conclusions: There is a disparity between educational needs as derived from self-rated competencies and from educational diary keeping; suggesting that Children's hospice doctors may not be fully aware of their own educational, support and training needs. Self-rated competencies emphasise the value of education in craft or clinical skills; whereas personal diary keeping emphasises the value of education in intrapersonal and interpersonal skills such as communication, team-working and personal coping skills. The current curricula and educational resources need to acknowledge that interpersonal and intrapersonal competencies are as important as clinical competencies. While the study looks particularly at the educational needs of children's hospice doctors, readers may feel that the findings are of relevance to all specialities and disciplines.

A case report where parathyroid bone disease simulates bone metastases. Subsequent treatment of underlying hyperparathyroidism causes a marked improvement in bone disease, leading to a review of the initial diagnosis.