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Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer—patient dyads were randomized to ‘usual care’ or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further. [ABSTRACT FROM PUBLISHER]

There is growing recognition that patients should have greater opportunity to plan their future care, a process known as advance care planning. The aims of this phase I qualitative focus group study were (1) to explore the acceptability of an interview schedule, designed to encourage conversations regarding future care; and (2) to explore the suitability of such discussions and inquire about their possible timing, nature and impact. Purposive sampling was used to achieve a balanced sample of 22 palliative care and oncology patients, relatives and user group members. The results showed that, although some patients welcome the opportunity to discuss end-of-life care, others may not feel ready or able to do so. The timing of a discussion is likely to influence its acceptability and effect. A discussion might best be initiated after recurrence of disease. The person initiating discussion should be skilled in responding to the cues of the patient, and should enable the patient to close the topic down at the end of the discussion, in order to avoid dwelling too much on the end of life. Advance care planning should take place over a number of meetings, and be conducted by an appropriately trained professional with sufficient time to talk through the issues raised, and with the knowledge and skills to answer questions, tailor the discussion to the individual, and avoid destroying hope. Advance decisions to refuse treatment should not be the focus of the discussion, but one component of a broader conversation about end-of-life issues. If patients make an advance decision to refuse certain treatments, they should be given the opportunity to change their minds in the future. [ABSTRACT FROM AUTHOR]

Background: Provision of palliative care for patients with non-cancer conditions is hindered by the difficulty of predicting when people will die and fear of causing distress by raising end-of-life issues. Objectives: To compare patients' and professionals' (1) estimations of prognosis; (2) perceptions of the seriousness of the illness and needs for supportive care; and (3) acceptability of this sensitive research, in end-stage cancer and non-cancer diseases. Design: Prospective cohort study. Setting: A teaching hospital and a Marie Curie hospice in London. Subjects: Twenty patients with advanced non-malignant disease (heart failure, chronic obstructive pulmonary disease and renal failure) and 20 patients with advanced cancer, and their physicians in charge. Method: A feasibility study using vignettes to aid patients and doctors estimate of prognoses. Main outcome measures were (1) patients' and physicians' estimates of health status, care needs and prognosis; and (2) patient survival. Results: Patients were willing and able to estimate their own life expectancy and cancer patients correctly estimated that they had a poorer prognosis than non-cancer patients. Non-cancer patients perceived that they had similar needs for supportive care as cancer patients. Physicians made little distinction in palliative care needs between patients with and without cancer, but tended to make more pessimistic estimates of prognosis in non-cancer patients. Conclusions: Patients are able to judge their health status and life expectancy and do not object to questions about end-of-life care. Cancer and non-cancer patients have similar needs for supportive care. We need further evidence on the value of self-rated prognosis and how to provide palliative and supportive care for all patients who are near death. [ABSTRACT FROM AUTHOR]

Background: Little is known about sexual problems in patients with cancer. Aims: To estimate 1) the prevalence and characteristics of sexual dysfunction in patients undergoing treatment for cancer, 2) how sexual dysfunction varies with stage of illness. Method: Cross-sectional study of outpatients with cancer attending palliative care and oncology services and matched patients without cancer attending general practice. Patients completed a questionnaire on sexual function designed in a feasibility study, the Derogatis subscale on sexual satisfaction, the GHQ12 and the EuroQol. Results: Patients with all types of cancer are willing to talk about their sex lives and the impact of the disease on their sexual function. This impact was significant when compared to the comparison group of general practice attendees of the same age. Palliative care patients were affected more than other cancer patients. Conclusion: This work may lead to greater awareness among healthcare professionals that patients with all types of cancer may experience sexual difficulties. Addressing potential sexual problems during the course of disease may give patients confidence to discuss such issues as they occur, thus avoiding embarrassment or aggravation of the problems later in their illness. [ABSTRACT FROM AUTHOR]