Background: In the United Kingdom, an approach to improving end-of-life care has been the introduction of ‘just in case’ or ‘anticipatory’ medications. Nurses are often responsible for deciding when to use anticipatory medications, but little is known about their experiences. Aim: To examine nurses’ decisions, aims and concerns when using anticipatory medications. Design: An ethnographic study in two UK regions, using observations and interviews with nurses working in community and nursing home teams ( n = 8). Findings: Observations ( n = 83) and interviews ( n = 61) with community nurses. Nurses identified four ‘conditions’ that needed to be established before they implemented anticipatory medications: (1) irreversibility; (2) inability to take oral medication; (3) where the patient was able, they should consent and (4) decision had to be independent of demands or requests from patient’s relatives. By using anticipation medications, nurses sought to enable patients to be ‘comfortable and settled’ by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call-out, while adhering to local prescribing policies. Worries included distinguishing between pain and agitation, balancing risks of under- and over-medication and the possibility of hastening death. Conclusion: Nurses take a leading role in the administration of anticipatory medications. Nurses apply consideration and caution to the administration of anticipatory medications but some experience emotional burden. Education, training and experience played a role in the nurses’ confidence and should continue to be central to efforts to improving the quality of palliative care in the community and nursing homes.

Pressure on lung cancer clinics is increasing with the "2-week wait" initiative. This initiative is one of the key targets set out in the National Health Service (NHS) Cancer Plan for the United Kingdom, whereby all patients presenting with symptoms which may be indicative of a cancer diagnosis will be seen by a consultant within 2 weeks of initial presentation at their primary care provider. This has resulted in busy clinics, with the potential for extended clinic waiting times and unmet needs for information and psychosocial support on the part of patients and families. There is increasing interest in the most appropriate mode of follow-up for patients with lung cancer who are under observation, many of whom have completed specific treatments. Such patients may benefit from specialist nurse review for symptom control and psychosocial support. Nurse-led clinics are safe and cost effective in the oncology and research-funded setting. This study aimed to assess the acceptability of nurse-led follow-up in a large general lung cancer clinic seeing approximately 250 new patients annually. Over a 34-week period, there were 487 follow-up attendances and 94 (19.3%) of these were made by 72 patients deemed eligible for nurse-led follow-up. Sixty patients were approached and 54 (90%) agreed to participate in the study. A questionnaire containing vignette scenarios of nurse-led, telephone, GP-led, and standard (hospital, medical) follow-up was completed by 34/54 (63%) of eligible patients, 10/20 (50%) carers, 20/31 (65%) staff, and 11/38 (29%) GPs. Respondents rated acceptability of the scenarios on a range of issues on a scale of 1 to 5. Patients also completed the EORTC QLQ C30 and lung module questionnaire. Subsequent interviews were carried out with samples of these respondent groups.Fatigue, dyspnea, cough, and pain were the most common general symptoms. Both standard and nurse-led follow-up scenarios were highly rated by patients and other respondents and both were highly significantly favored over GP follow-up, which was the least favored in all areas of the questionnaire. Telephone follow-up tended to elicit more polarized reactions, both positive and negative. In interviews, in relation to nurse-led follow-up, the importance of clear protocols, training, and easy access to medical review were highlighted.

Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes. To explore the literature focused on family caregivers' (FCGs) experiences of medication management for patients being cared for and dying at home. This literature review takes a critical interpretive synthesis approach to the review of 15 identified articles. Findings show that FCGs can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and are often judged by professional standards. Five key themes identified particular issues around administration, organizational skills, empowerment, relationships, and support. As increasing demands are placed on FCGs, there remains limited acknowledgment or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, FCGs need access to 24 hours of support and medication reviews to rationalize unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

There is growing evidence of inequalities in access to high‐quality cancer services between minority and majority ethnic groups. However, little research has been carried out from the perspective of users from minority ethnic groups themselves. This paper reports a review of the British literature exploring the views and experiences of cancer service users from minority ethnic groups. We reviewed 25 qualitative studies that reported the experiences of people from minority ethnic groups. The studies highlighted significant issues and challenges, including comprehension and communication barriers, a lack of awareness of the existence of services and a perceived failure by providers to accommodate religious and cultural diversity. This paper critically discusses some of the explanations commonly invoked for ethnic inequalities in access to high‐quality care, such as the belief that the lack of use of services reflects a lack of need. Despite positive initiatives to respond better to the needs of minority groups, we suggest the impact of these remains highly variable. Institutional racism within services is still much in evidence.

Background: Advance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic.Aim: To investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life.Design and data collection: Qualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total.Setting: General practices and community care settings in the East Midlands of England.Findings: The study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare.Conclusions: Advance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity.Future work: Attention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care.Funding: The National Institute for Health Research Health Services and Delivery Research programme.