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Objective To examine the impact of oncologist awareness of palliative care (PC), the intervention of the PC team (PCT) and multidisciplinary decision-making on three quality indicators of end-of-life (EOL) care. Setting Cochin Academic Hospital, Paris, 2007–2008. Design and participants A 521 decedent case series study nested in a cohort of 735 metastatic cancer patients previously treated with chemotherapy. Indicators were location of death, number of emergency room (ER) visits in last month of life and chemotherapy administration in last 14 days of life. Multivariable logistic regression models were used to estimate associations between indicators and oncologist's awareness of PC, PCT intervention and case discussions at weekly onco-palliative meetings (OPMs). Results 58 (11%) patients died at home, 45 (9%) in an intensive care unit or ER, and 253 (49%) in an acute care hospital; 185 (36%) patients visited the ER in last month of life and 75 (14%) received chemotherapy in last 14 days of life. Only the OPM (n=179, 34%) independently decreases the odds of receiving chemotherapy in last 14 days of life (OR 0.5, 95% CI 0.2 to 0.9) and of dying in an acute care setting (0.3, 0.1 to 0.5). PCT intervention (n=300, 58%) did not independently improve any indicators. Among patients seen by the PCT, early PCT intervention had no impact on indicators, whereas the OPM reduced the odds of persistent chemotherapy in the last 14 days of life. Conclusion Multidisciplinary decision-making with oncologists and the PCT is the most critical parameter for improving EOL care.

Scientific advances in novel cancer therapeutics have led to remarkable changes in oncology practice and longer lives for patients diagnosed with incurable malignancies. However, the myriad options for treatment have established a culture of cancer care that has not been matched with a similar availability of efficacious supportive care interventions aimed at relieving debilitating symptoms due to progressive disease and treatment side effects. Accumulating data show that the introduction of palliative care services at the time of diagnosis of advanced cancer leads to meaningful improvement in the experiences of patients and family caregivers by emphasizing symptom management, quality of life, and treatment planning. In this review article, the rationale and evidence base for this model of early palliative care services integrated into standard oncology care are presented. In addition, the implications and limitations of the existing data to 1) elucidate the mechanisms by which early palliative care benefits patients and families; 2) guide the dissemination and application of this model in outpatient settings; and 3) inform health care policy regarding the delivery of high-quality, cost-effective, and comprehensive cancer care are discussed. [PUBLICATION ABSTRACT]

Key Points The aim of the management of ALS is to maximize quality of life and minimize morbidity Guidelines for symptomatic care are becoming more evidenced-based Management by a specialist, clinic-based multidisciplinary team is associated with improved survival In patients with respiratory failure, noninvasive ventilation prolongs survival and improves quality of life Nutritional status is an independent predictor of survival and, if patients opt for enteral feeding, early gastrostomy insertion is recommended before significant weight loss takes place Cognitive impairment is common in ALS and is associated with a worse prognosis; the optimal management of this problem is unclear Although no cure exists for amyotrophic lateral sclerosis (ALS), supportive and symptomatic care can prolong survival and improve quality of life. This Review discusses best strategies to manage symptoms in patients with ALS, including respiratory and nutritional support. Such interventions should involve a specialist multidisciplinary team, and patient should be given an active role in planning of the care. The main aims in the care of individuals with amyotrophic lateral sclerosis (ALS) are to minimize morbidity and maximize quality of life. Although no cure exists for ALS, supportive and symptomatic care provided by a specialist multidisciplinary team can improve survival. The basis for supportive management is shifting from expert consensus guidelines towards an evidence-based approach, which encourages the use of effective treatments and could reduce the risk of harm caused by ineffective or unsafe interventions. For example, respiratory support using noninvasive ventilation has been demonstrated to improve survival and quality of life, whereas evidence supporting other respiratory interventions is insufficient. Increasing evidence implicates a causal role for metabolic dysfunction in ALS, suggesting that optimizing nutrition could improve quality of life and survival. The high incidence of cognitive dysfunction and its impact on prognosis is increasingly recognized, although evidence for effective treatments is lacking. A variety of strategies are used to manage the other physical and psychological symptoms, the majority of which have yet to be thoroughly evaluated. The need for specialist palliative care throughout the disease is increasingly recognized. This Review describes the current approaches to symptomatic and supportive care in ALS and outlines the current guidance and evidence for these strategies.

BackgroundCommunity-based and home-based palliative and end-of-life care (PEoLC) services, often underpinned by primary care provision, are becoming increasingly popular. One of the key challenges associated with them is their timely initiation. The latter requires an accurate enough prediction of how close to death a patient is.MethodsUsing ‘realist synthesis’ tools, this review sought to develop explanations of how primary care and community PEoLC programmes generate their outcomes, with the explanations presented as context–mechanism–outcome configurations. Medline, Embase, CINAHL, PsycINFO, Web of Science, ASSIA, Sociological Abstracts and SCIE Social Care Online were originally searched. A multistage process of focusing the review was employed, with timely identification of the EoL stage and timely initiation of associated services representing the final review focus. Synthesised sources included 21 full-text documents and 324 coded abstracts, with 253 ‘core contents’ abstracts generating >800 codes.ResultsNumerous PEoLC policies and programmes are embedded in a framework of Preparation and Planning for Death and Dying, with identification of the dying stage setting in motion key systems and services. This is challenged by: (1) accumulated evidence demonstrating low accuracy of prognostic judgements; (2) many individuals’ orientation towards Living and Hope; (3) expanding grey zones between palliative and curative care; (4) the complexity of referral decisions; (5) the loss of pertinent information in hierarchical relationships and (6) the ambiguous value of having ‘more time’.ConclusionPrioritising temporal criteria in initiating PEoLC services is not sufficiently supported by current evidence and can have significant unintended consequences.PROSPERO registration numberCRD42018097218.

Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.

Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia. Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia. The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention.

The use of cancer treatments in the terminal stages of life is an increasingly important clinical, ethical, and organizational issue. Despite recommendations from major scientific organizations to reduce active treatments for patients with a limited life expectancy, significant evidence shows that these therapies continue to be used even during the final days or weeks of life. This trend raises important questions regarding the quality of care, the appropriate balance between risks and benefits, the effective use of healthcare resources, communication between physicians and patients, and the incorporation of palliative care into the overall oncological treatment plan. Given these considerations, it is essential to analyze the clinical and organizational factors that influence these decisions. The goal is to develop effective strategies that promote more appropriate care, encourage the earlier integration of palliative care, and reduce the use of unnecessary or potentially harmful treatments during the terminal phases of illness.

ObjectivesTo describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.MethodsAn online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people’s cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.Results91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents.ConclusionsChildren at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences.

In the last decade, we have seen a growth of Compassionate Communities and Cities (CCC) at the end of life. There has been an evolution of organizations that help construct Community-Based Palliative Care programs. The objective is to analyze the implementation, methodology and effectiveness of the CCC models at the end of life. We conducted a systematic review following PRISMA ScR Guideline. The protocol was registered on PROSPERO (CRD42017068501). Five databases (MEDLINE, EMBASE, Web of Science, CINAHL and Google Scholar) were searched for studies (from 2000 to 2018) using set eligibility criteria. Three reviewers screened full-texts articles and extracted study data. Outcomes were filled in a registration form which included a narrative synthesis of each article. We screened 1975 records. We retrieved 112 articles and included 31 articles for the final analysis: 17 descriptive studies, 4 interventions studies, 4 reviews and 6 qualitative studies. A total of 11 studies regard the development models of CCC at the end of life, 15 studies were about evaluation of compassionate communities’ programs and 5 studies were about protocols for the development of CCC programs. There is poor evidence of the implementation and evaluation models of CCC at the end of life. There is little and low-/very low-quality evidence about CCC development and assessment models. We found no data published on care intervention in advance disease and end of life. A global model for the development and evaluation of CCC at the end of life seems to be necessary.

Canadian palliative care in the setting of chronic illness remains relatively underdeveloped. According to two reports from the Canadian Institute for Health Information from 2007 and 2011, noncancer illnesses accounted for more than two-thirds of all deaths in Canadian provinces.7,8 Other studies have noted that only 20%-30% of patients referred for consultation and admission to a palliative care unit had noncancer illness.9,10 When patients without cancer are admitted to a palliative care unit, they are typically closer to death and have a lower functional status than those with cancer.9 Population-based data suggest that Canadians dying of cancer are 5 times more likely to receive palliative care in hospital than patients dying of organ failure, and 10 times more likely than patients dying with a frailty trajectory.7 Patients dying with a frailty trajectory are almost as likely to receive inpatient palliative care as those who experience \"sudden death.\"8 Not all people who need palliative care are facing imminent death. Many patients with end-stage organ failure are justified in thinking that \"life-sustaining therapy\" could help them during an exacerbation of their illness (e.g., noninvasive ventilation for COPD, or use of inotropes for heart failure). Recent qualitative research suggests some ambivalence by patients and caregivers about the term \"palliative care.\"25 The success of promoting a more positive concept is perhaps best evidenced by efforts based on public opinion research of the US Center to Advance Palliative Care to redefine palliative care as an added layer of support during care of any serious illness.26 This public opinion research has been one of the key drivers of enhanced access (often concurrently with active treatment) and acceptance of palliative care. For example, in the decade before 2014, 1000 new hospital-based palliative care teams were created. As of 2014, palliative care was the fastest growing specialty in the US,27 and according to a 2015 report, more than 70% of hospitals with at least 50 beds had palliative care teams.28 The Royal College of Physicians and Surgeons of Canada recently approved a two-year subspecialty training program in palliative medicine to replace the 12-month residency program that was conjointly accredited by the College of Family Physicians of Canada. This program will go some way to addressing gaps in palliative care for noncancer illness, which will be the main focus of the additional year. The cold reality of insufficient numbers of palliative medicine specialists in Canada6 and of education gaps reported by internal medicine residents in a national survey29 supports the proposal from the Center to Advance Palliative Care that all clinicians who care for people with serious illnesses have training in the core knowledge and skills of palliative care.30 The completion of the centre's curriculum by more than 8500 clini- cians (75% of whom were from specialties outside of palliative care) suggests widespread professional support.30 The Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada should add mandatory palliative medicine rotations to the specific training requirements for residency programs in family medicine, emergency medicine and internal medicine, and in all of the subspecialty programs. This training should encompass the core triad of palliative care - pain and symptom management (including psychological and spiritual distress), communication skills, and care coordination for patients with complex illnesses and their families. Other health professionals (e.g., nurses, social workers and home health workers) will need additional training to improve palliative care skills in, for example, long-term care settings where much palliative care is provided.31