BackgroundCurrent models of end-of-life care (EOLC) have been largely developed for cancer and may not meet the needs of heart failure patients. AimTo review the literature concerning conversations about EOLC between patients with heart failure and healthcare professionals, with respect to the prevalence of conversations; patients' and practitioners' preferences for their timing and content; and the facilitators and blockers to conversations.

BackgroundRecent years have seen marked improvements in end-of-life care, however concerns have been expressed that services are focused on the needs of patients with cancer. This review focuses on conversations about end-of-life care with frail and older people who have no main overriding diagnosis who are estimated to account for around 40% of deaths.AimTo investigate the attitudes of the public and healthcare professionals to advance care planning discussions with frail and older people.Design and settingSystematic literature review and narrative synthesis.MethodArticles that related to frail or older individuals and either advance care plans or discussions on end-of-life care were included. Studies of specific conditions or that focused on prognosis, capacity, or resuscitation decisions were excluded.ResultsWhile a significant minority of frail older individuals would find them unwelcome, the majority would appreciate the chance to discuss end-of-life care, yet most do not have this opportunity. Attitudes to the timing of these discussions were variable, but most perceived the risk of leaving them too late. Most doctors believed it was their professional responsibility to initiate discussions, but felt limited by time pressures and the absence of a precipitating event. A wide range of barriers were identified including the reluctance of family members to discuss end-of-life care, the passive expectation that someone else would decide on an individual’s behalf, and significant uncertainty concerning future illness and decline.ConclusionThe marked disparity between the majority of older individuals who would like the opportunity to discuss their end-of-life care and the minority that currently have this opportunity raises important questions if the wishes of this large group in society are to be respected. The challenge is to find effective ways of encouraging dialogue and choice within the constraints of the current healthcare systems and personal circumstances.

Objective To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care. Design A national consultation and prioritising exercise using a modified form of the nominal group technique. Participants Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Setting Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland. Results 74% of those invited (210/285) participated. The stage of life to which "end of life care" referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist's workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Conclusions Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.

Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n=24) and heart failure (n=24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations. Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.

In the UK, researchers' access to study populations and control over selection of participants is becoming increasingly constrained by data protection and research governance legislation. Intervening stages placed between researchers and the population they wish to study can have serious effects on recruitment and ultimately on the validity of studies. In this paper we describe our experiences of gaining access to patients for a study of palliative care in primary care. Despite considerable time and resources dedicated to recruitment, a smaller than anticipated study sample was achieved. We found that gatekeeping by ethics committees and practitioner control over sample selection were significant hurdles in accessing patients for the study. Gatekeeping responsibilities represent considerable challenges for researchers seeking to obtain a representative study sample, not just in palliative care, but for research in general in health care.

Objective To develop a novel prognostic indicator for use in patients with advanced cancer that is significantly better than clinicians' estimates of survival.Design Prospective multicentre observational cohort study.Setting 18 palliative care services in the UK (including hospices, hospital support teams, and community teams).Participants 1018 patients with locally advanced or metastatic cancer, no longer being treated for cancer, and recently referred to palliative care services. Main outcome measuresPerformance of a composite model to predict whether patients were likely to survive for "days" (0-13 days), "weeks" (14-55 days), or "months+" (>55 days), compared with actual survival and clinicians' predictions.Results On multivariate analysis, 11 core variables (pulse rate, general health status, mental test score, performance status, presence of anorexia, presence of any site of metastatic disease, presence of liver metastases, C reactive protein, white blood count, platelet count, and urea) independently predicted both two week and two month survival. Four variables had prognostic significance only for two week survival (dyspnoea, dysphagia, bone metastases, and alanine transaminase), and eight variables had prognostic significance only for two month survival (primary breast cancer, male genital cancer, tiredness, loss of weight, lymphocyte count, neutrophil count, alkaline phosphatase, and albumin). Separate prognostic models were created for patients without (PiPS-A) or with (PiPS-B) blood results. The area under the curve for all models varied between 0.79 and 0.86. Absolute agreement between actual survival and PiPS predictions was 57.3% (after correction for over-optimism). The median survival across the PiPS-A categories was 5, 33, and 92 days and survival across PiPS-B categories was 7, 32, and 100.5 days. All models performed as well as, or better than, clinicians' estimates of survival. ConclusionsIn patients with advanced cancer no longer being treated, a combination of clinical and laboratory variables can reliably predict two week and two month survival. IntroductionPatients with advanced cancer and their carers often wish to know how long they have left to live. 1 2 Accurate prognostic information can allow patients adequate time to prepare for their impending death. 3 Qualitative studies show that patients in palliative care want to be given honest and accurate prognostic information but that this information needs to be shared sensitively and in a way that respects patients' desire to maintain hope. 4 5 Prognostic information is also important for clinicians. Realistic survival estimates can inform decisions about the appropriateness of medical interventions and the timing of referral to specialist palliative care services or admission to a hospice. Clinicians' predictions are routinely used to prioritise patients who are suitable for inclusion in programmes such as the Gold Standards Framework, 6 to determine which patients RESEARCHare suitable for "fast-tracking" arrangements for ...

Advance care planning is being promoted as a central component of end-of-life policies in many developed countries, but there is concern that professionals find its implementation challenging. AimTo assess the feasibility of implementing advance care planning in UK primary care. Design of studyMixed methods evaluation of a pilot educational intervention. SettingFour general practices in south-east Scotland. MethodInterviews with 20 GPs and eight community nurses before and after a practice-based workshop; this was followed by telephone interviews with nine other GPs with a special interest in palliative care from across the UK. ResultsEnd-of-life care planning for patients typically starts as an urgent response to clear evidence of a short prognosis, and aims to achieve a 'good death'. Findings suggest that there were multiple barriers to earlier planning: prognostic uncertainty; limited collaboration with secondary care; a desire to maintain hope; and resistance to any kind of 'tick-box' approach. Following the workshop, participants' knowledge and skills were enhanced but there was little evidence of more proactive planning. GPs from other parts of the UK described confusion over terminology and were concerned about the difficulties of implementing inflexible, policy-driven care. ConclusionA clear divide was found between UK policy directives and delivery of end-of-life care in the community that educational interventions targeting primary care professionals are unlikely to address. Advance care planning has the potential to promote autonomy and shared decision making about end-of-life care, but this will require a significant shift in attitudes. Keywordsadvance care planning; cancer; palliative care; primary health care. INTRODUCTIONAdvance care planning is viewed as an intrinsic component of end-of-life care programmes in many developed countries. In the US, advance directives were originally intended to allow people to record an advance refusal of invasive, life-prolonging interventions.1 The limitations of this approach resulted in a progressive move internationally towards a broader process of advance care planning that also includes discussion of personal goals, wishes, and preferences about future care. [2][3][4] Programmes in the US and Australia that have adopted a regional strategy towards educating professionals, patients, and the general public about advance care planning have had some success. 5,6 Proactive care planning is central to recent UK policies, and the expectation is that it will now be offered to all patients approaching the end of life.

Older people living in a care home have a limited life expectancy and care homes are an important setting for end of life care provision. This research aimed to explore the views, experiences and expectations of end of life care among care home residents to understand if key events or living in a residential environment influenced their views. The research used a prospective design. The paper draws on the data of 121 care home residents (a sub-sample of 63 were interviewed three times over a year) recruited from six care homes (without on-site nursing) in the UK. Four main themes were identified; Living in the Past, Living in the Present, Thinking about the Future and ActivelyEngaged with planning the future. Many residents said they had not spoken to the care staff about end of life care; many assumed their family or General Practitioner would take responsibility. Core to the older person's ability to discuss end of life care is their acceptance of being in a care home, the involvement of family members in making decisions and the extent to which they believed they could influence decision making within their everyday lives.