The experience of living with relapsed Multiple Myeloma (myeloma) for eight patients accessing treatment within a haematology unit in a large London hospital is explored in this study. Myeloma is recognised as incurable and is sometimes described as an 'incurable chronic disease' with a main treatment option of chemotherapy. Hermeneutic phenomenology was the methodology used in conducting the study and data were collected through open-ended, unstructured interviews. Findings suggest that living with relapsed myeloma in the context of a chronic illness causes an ever-shifting perspective between illness and wellness consequently maintaining a state of uncertainty. The patients in this study placed importance on the emotional aspect of their experience. Hope, intuitive knowing and a fighting spirit were expressed as required positive elements that enabled living with relapsed myeloma. These assisted in maintaining normality, coping with bad news and adjusting to the illness. Pervading through the themes was the need to control uncertainty. Having strong support from significant others provided something to live for and the necessary social support required to promote a new orientation to life.

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The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.

ObjectivesTraditional healthcare education, delivered through a series of time‐limited clinical placements, often fails to deliver an understanding of the experiences of those with long‐term conditions, a growing issue for healthcare systems. Responses include longitudinal integrated clerkships and senior mentor programmes allowing students' longer placements, continuity of contact and opportunities to learn about chronic illness and patient experience. We review their development and delivery in dementia and present the Time for Dementia (TFD) Programme, a novel 2‐year interdisciplinary educational programme.DesignThe study design involves a scoping review of enhanced placements in dementia for healthcare professionals in training including longitudinal integrated clerkships and senior mentor programmes and a case study of the development of TFD and its evaluation.ResultsEight enhanced programmes in dementia were identified and seven in the USA. None were compulsory and all lasted 12 months. All reported positive impact from case study designs but data quality was weak. Building on these, TFD was developed in partnership between the Alzheimer's Society, universities and NHS and made a core part of the curriculum for medical, nursing and paramedic students. Students visit a person with dementia and their family in pairs for 2 h every 3 months for 2 years. They follow a semi‐structured interaction guide focusing on experiences of illness and services and complete reflective appraisals.ConclusionsWe need interprofessional undergraduate healthcare education that enables future healthcare professionals to be able to understand and manage the people with the long‐term conditions who current systems often fail. TFD is designed to help address this need. © 2016 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

Aim: To investigate the symptom experience, access to supportive care services and rehabilitation of patients with a primary malignant brain tumour (PMBT) and their carers. Methods: A case review of 70 patients with a diagnosis of PMBT who received palliative care in fi ve specialist palliative care units between July 2005 and June 2006. The review examined patients' symptom experience, care issues, access to rehabilitation and access to supportive care services. Results: The two most signifi cant issues experienced by patients and identifi ed in the case review were hemiparesis (17%) and cognitive problems (16%). There were a number of care problems concerning safety related to mobility and falls (9%). Symptoms related to fatigue and tiredness were reported infrequently. There was an absence of information relating to the needs of informal carers; however, 18% of carers accessed bereavement counselling services following the death of the person they cared for. Conclusion: The needs of carers were not found to be routinely documented within the case notes. For some patients, referral to specialist palliative care services occur late in the illness trajectory, which means that patients and carers may not be able to access the full range of supportive care services available. Initial assessment of patients should identify the range of support services that both carers and patients are offered; and the uptake and response to services should be documented throughout the illness trajectory.

This study examined the ethical issues experienced by nurses working in a small group of elderly persons' care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However 'culture' relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons' care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated the different needs of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients' quality of death.

The COVID-19 pandemic has had a devastating impact on care homes in the United Kingdom, particularly for those residents living with dementia. The impetus for this article comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient ethical values for delivering care to care home residents living with dementia during the pandemic was derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, well-being, safety, and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this article discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, well-being and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and Personal Protective Equipment, unclear data, and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued.

Objective: Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients.Method: Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data.Results: Facilitating a "peaceful death" was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be "comfortable," "relaxed," and "calm" at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, "juggling the drugs," "causing the death," sedating young people, the family "requesting" sedation, and believing that hospice is a place where death is hastened.Significance of results: Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.