Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

GPs would benefit from clearer guidance on which aspects of clinical practice contribute to effective safety netting for cancer. Practice systems that enable active follow-up of patients with low-risk-but-not-no-risk symptoms, which could represent malignancy, could reduce delays in cancer diagnosis without increasing GP workload.

Caring for the dying presents perhaps the most challenging site of informal care. Participation in informal caring roles in such contexts has been prone to reification as a virtuous social practice, often without critical reflection as to the implications for caregivers. Here, drawing on interviews with carers who were providing care in the last few weeks or days of life, we develop an understanding of informal care in this setting as a morally ambiguous social practice, framed by social relations of duty, gift and virtue, but in turn encapsulating experiences of failure, shame and suffering. Such a contradictory understanding of caregiving is critical for understanding the tensions within end-of-life settings and also for countering the concealments produced by the valorization of informal care more broadly in modern societies. We present a critical analysis of informal care's contested character at the end of life, challenging normative understandings that are complicit in producing moral ambivalence, shame and suffering for individual carers.

Commentators such as Goldacre, Dawkins, and Singh and Ernst are worried that the rise in complementary and alternative medicine (CAM) represents a flight from science propagated by enemies of reason. We outline what kind of problem CAM use is for these commentators, and find that users of CAM have been constituted as duped, ignorant, irrational, or immoral in explaining CAM use. However, this form of problematization can be described as a flight from social science. We explore CAM use in light of a rigorous and robust social scientific body of knowledge about how individuals engage with CAM. By pointing to the push and pull factors, CAM user's experiences of their body, and the problem of patient choice in CAM use, we summarize some of the key findings made by social scientists and show how they trouble many of the reasoned assumptions about CAM use.

Home is frequently idealised as the preferred location for end-of-life care, while in-patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care in-patient unit. Drawing on semi-structured interviews with in-patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family.

Background: Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal.Aim: To explore the views of primary care HCPs on how to improve their engagement with ACP in heart failure.Design and Setting: A qualitative interview study with GPs and primary care nurses in England.Method: Semi-structured interviews were conducted with a purposive sample of 24 primary HCPs. Data were analysed using reflexive thematic analysis.Results: Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients’ quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease specific communication skills and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialities, and disease specific training. Conclusion: GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP.

Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.

BackgroundClinicians hesitate to engage with advance care planning (ACP) in heart failure. We aimed to identify the disease-specific barriers and facilitators for clinicians to engage with ACP.MethodsWe searched Medline, Embase, CINAHL, PubMed, Scopus, the British Nursing Index, the Cochrane Library, the EPOC register, ERIC, PsycINFO, the Science Citation Index and the Grey Literature from inception to July 2018. We conducted the review according to Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Two reviewers independently assessed original and empirical studies according to Critical Appraisal Skills Programme criteria. The SURE framework and thematic analysis were used to identify barriers and facilitators.ResultsOf 2308 articles screened, we reviewed the full text of 42 studies. Seventeen studies were included. The main barriers were lack of disease-specific knowledge about palliative care in heart failure, high emotional impact on clinicians when undertaking ACP and lack of multidisciplinary collaboration between healthcare professionals to reach consensus on when ACP is indicated. The main facilitators were being competent to provide holistic care when using ACP in heart failure, a patient taking the initiative of having an ACP conversation, and having the resources to deliver ACP at a time and place appropriate for the patient.ConclusionsTraining healthcare professionals in the delivery of ACP in heart failure might be as important as enabling patients to start an ACP conversation. This twofold approach may mitigate against the high emotional impact of ACP. Complex interventions are needed to support clinicians as well as patients to engage with ACP.