Non-specialist Palliative Care Research Articles

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study

BackgroundEnd-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals.MethodsVolunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital.ResultsBarriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK).ConclusionEstablishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained.Trial registrationNCT04678310. Registered 21/12/2020.

The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals’ and patient and family carers’ perspectives

Background: Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. Aim: To establish expert consensus on the most important components of out-of-hours community palliative care services. Design: Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project’s patient and public involvement advisory group. The components deemed ‘essential’ by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1. Participants: Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home. Results: Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans. Conclusions: The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.

Non-specialist palliative care - question prompt list preparation: patient, family and clinician experiences

ObjectivesQuestion prompt lists (QPLs) support patients and family to ask questions they consider important during conversations with clinicians. We aimed to evaluate how a QPL developed for specialist palliative care...

"Palliative Syringe Driver"? A Mixed-Methods Study in Different Hospital Departments on Continuous Infusions of Sedatives and/or Opioids in End-of-Life Care.

ObjectivesContinuous infusions of sedatives and/or opioids (continuous infusions) are frequently used in end-of-life care. Available data indicate challenges in nonspecialist palliative care settings. We aimed to assess the use of continuous infusions during the last week of life in different hospital departments.MethodsIn a sequential mixed-methods design, a retrospective cohort study was followed by consecutive qualitative interviews in 5 German hospital departments. Medical records of 517 patients who died from January 2015 to December 2017 were used, and 25 interviews with physicians and nurses were conducted. Recorded sedatives were those recommended in guidelines for “palliative sedation”: benzodiazepines, levomepromazine, haloperidol (≥5 mg/d), and propofol. Exploratory statistical analysis (R 3.6.1.) and framework analysis of interviews (MAXQDA 2018.2) were performed.ResultsDuring the last week of life, 359 of 517 deceased patients (69%) received continuous infusions. Some interviewees reported that continuous infusions are a kind of standard procedure for “palliative” patients. According to our interviewees’ views, equating palliative care with continuous infusion therapy, insufficient experience regarding symptom control, and fewer care needs may contribute to this approach. In addition, interviewees reported that continuous infusions may be seen as an “overall-concept” for multiple symptoms. Medical record review demonstrated lack of a documented indication for 80 of 359 patients (22%). Some nurses experienced concerns or hesitations among physicians regarding the prescription of continuous infusions.ConclusionsContinuous infusions seem to be common practice. Lack of documented indications and concerns regarding the handling and perception of a “standard procedure” in these highly individual care situations emphasize the need for further exploration and support to ensure high quality of care.

Neither Last nor Least: Integration of Early Palliative Care Into Standard Oncology Care

Traditionally, medical oncology has concentrated on the development, implementation, and application of anticancer therapies, therefore in a number of cancers long- and short-term survival has been significantly improved.1 However, for most patients, quality of life is crucial, irrespective of the clinical course of the illness or the duration of survival.2 It is estimated that by 2060, over 16 million people will die from malignant neoplasms and experience serious health-related suffering annually, which is double the number compared with 2016.3 Consequently, building non-specialist palliative care capacity among all healthcare providers by integration of palliative care in the oncological treatment as early as possible is crucial.2,4 But how can we do that?

Lack of Effect of a Multicomponent Palliative Care Program for Nursing Home Residents on Hospital Use in the Last Month of Life and on Place of Death: A Secondary Analysis of a Multicountry Cluster Randomized Control Trial

ObjectivesPACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death. DesignSecondary analysis of the PACE cluster randomized controlled trial (ISRCTN14741671). Data were collected on deaths over the previous 4 months via questionnaires at baseline and postintervention. Setting and ParticipantsQuestionnaires were completed by the nurse/care-assistant most involved from 78 nursing homes in 7 European Union countries. MeasuresWe measured number of emergency department visits, hospital admissions, length of hospital stay, and place of death. Baseline and postintervention scores between intervention and control groups were compared, and we conducted exploratory mixed-model analyses. We collected 551 out of 610 questionnaires at baseline and 984 out of 1178 at postintervention in 37 intervention and 36 control homes. ResultsWe found no statistical significant effects of the program on emergency department visits [odds ratio (OR) = 1.38, P = .32], hospital admissions (OR = 0.98, P = .93), length of hospital stay (geometric mean difference = 0.85, P = .44), or place of death (OR = 1.08, P = .80). Conclusions and ImplicationsWe found no effect of the PACE program on either hospital use in the last month of life or place of death. Although this may be related to implementation problems in some homes, the program might also require a more specific focus on managing acute end-of-life situations and a closer involvement of general practitioners or specialist palliative care services to influence hospital use or place of death.

Evaluation of a Palliative Care Program for Nursing Homes in 7 Countries

High-quality evidence on how to improve palliative care in nursing homes is lacking. To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes. A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 countries comparing PACE Steps to Success Program (intervention) with usual care (control). Randomization was stratified by country and median number of beds in each country in a 1:1 ratio. The PACE Steps to Success Program is a multicomponent intervention to integrate basic nonspecialist palliative care in nursing homes. Using a train-the-trainer approach, an external trainer supports staff in nursing homes to introduce a palliative care approach over the course of 1 year following a 6-steps program. The steps are (1) advance care planning with residents and family, (2) assessment, care planning, and review of needs and problems, (3) coordination of care via monthly multidisciplinary review meetings, (4) delivery of high-quality care focusing on pain and depression, (5) care in the last days of life, and (6) care after death. The primary resident outcome was comfort in the last week of life measured after death by staff using the End-of-Life in Dementia Scale Comfort Assessment While Dying (EOLD-CAD; range, 14-42). The primary staff outcome was knowledge of palliative care reported by staff using the Palliative Care Survey (PCS; range, 0-1). Concerning deceased residents, we collected 551 of 610 questionnaires from staff at baseline and 984 of 1178 postintervention in 37 intervention and 36 control homes. Mean (SD) age at time of death ranged between 85.22 (9.13) and 85.91 (8.57) years, and between 60.6% (160/264) and 70.6% (190/269) of residents were women across the different groups. Residents' comfort in the last week of life did not differ between intervention and control groups (baseline-adjusted mean difference, -0.55; 95% CI, -1.71 to 0.61; P = .35). Concerning staff, we collected 2680 of 3638 questionnaires at baseline and 2437 of 3510 postintervention in 37 intervention and 38 control homes. Mean (SD) age of staff ranged between 42.3 (12.1) and 44.1 (11.7) years, and between 87.2% (1092/1253) and 89% (1224/1375) of staff were women across the different groups. Staff in the intervention group had statistically significantly better knowledge of palliative care than staff in the control group, but the clinical difference was minimal (baseline-adjusted mean difference, 0.04; 95% CI, 0.02-0.05; P < .001). Data analyses began on April 20, 2018. Residents' comfort in the last week of life did not improve after introducing the PACE Steps to Success Program. Improvements in staff knowledge of palliative care were clinically not important. ISRCTN Identifier: ISRCTN14741671.

CN21 - Development of core indicators of non-specialist palliative care in hospitals: An international modified Delphi study

BackgroundHealthcare providers working in acute care hospitals have significant exposure to cancer patients with palliative care needs, and for the majority of patients these reflect non-specialist rather than specialist palliative care needs. Embedding non-specialist palliative care in acute hospital-based care is challenging. The aim of this paper is to present a core set of indicators for the provision of non-specialist palliative care in hospitals which was determined using a Delphi consensus process. MethodsPreliminary indicators derived from a concept analysis and systematic review were subjected to a three round modified Delphi study, whereby a multidisciplinary expert panel of key stakeholders appraised (rated) each preliminary indicator on its ‘importance’ to non-specialist palliative care provision in hospitals. Stakeholders were also offered an opportunity to add ‘new’ indicators as they considered relevant. Consensus was defined whereby 70%, or more, of the participants across stakeholder groups agreed that an indicator was ‘core’ to non-specialist palliative care provision in the hospital setting. ResultsA total of 92 experts (74% response rate) representing the views of patients, clinicians and researchers, from twelve countries participated in the final round. This study resulted in 32 core indicators of hospital based non-specialist palliative care, categorised into 5 structural indicators (relating to infrastructure and governance), 21 organisational indicators (relating to clinical care processes) and 6 staff indicators (relating to training and support for healthcare providers). ConclusionsThis study presents the first guidance for clinical practice, policy and research related to non-specialist palliative care provision in hospitals, based on evidence and International consensus from all key stakeholder groups. These indicators provide a means to assess, review, and communicate the core elements of non-specialist palliative care in hospitals, thereby setting a benchmark for changes in policy and practice. Legal entity responsible for the studyThe authors. FundingHealth Research Board. DisclosureAll authors have declared no conflicts of interest.

Polypharmacy and medication errors on palliative care admission

Many patients at the end of their life are treated with multiple medications while some of the drugs may no longer be beneficial and should be reduced. The aim of the study was to assess polypharmacy, overprescribing, and the incidence of presumable pharmacological errors at referral to palliative care. Current treatment in consecutive patients was analyzed based on the clinical judgment of a palliative care specialist on the first appointment. The number of drugs/tablets with pharmacotherapy inappropriateness was counted, analyzed, and a new therapy was proposed. A total of 337 patients were admitted. The median number of drugs / tablets used at referral was 7 / 9 per day. In patients with short life prognosis, the corresponding numbers were higher (8 / 10). Polypharmacy was found in 265 patients (78.6%) and at least 1 drug inappropriateness occurred in 238 patients (70.6%). The most frequent error type was lack of necessary concomitant drug. Patients who were bed‑bound (Palliative Performance Scale ≤40 points), with the shortest life expectancy (Gold Standards Framework, D), who died within 2 weeks or were discharged from the hospital and admitted to hospice had more often 1 or more potentially inappropriate medication. The risk of inappropriateness increased with the number of drugs / tablets prescribed by 13.3% / 7.4% per drug / tablet. The median number of drugs / tablets decreased on palliative consultation by 1.0 / 2.0 (P = 0.01 / P <0.001, respectively). Subgroups with a higher number of errors had a larger drug reduction. Polypharmacy and increased risk of drug inappropriateness particularly affect elderly patients referred by hospitals, with poor prognosis, low performance, admitted to in‑patient hospice. Therapy reduction may diminish the risk of therapeutic inappropriateness but requires further education within nonspecialist palliative care.

Defining 'specialist palliative care': findings from a Delphi study of clinicians

Objective This study aimed to achieve consensus regarding what distinguishes specialist from non-specialist palliative care to inform service organisation and delivery to patients with life-limiting conditions. Methods A three-phase Delphi study was undertaken, involving qualitative interviews and two questionnaire cycles. Thirty-one clinicians (nurses, doctors and social workers) working with a wide range of patients participated in interviews, of whom 27 completed two questionnaire cycles. Results Consensus was gained on 75 items that define specialist palliative care and distinguish it from non-specialist palliative care. Consensus was gained that specialist palliative care clinicians have advanced knowledge of identifying dying, skills to assess and manage complex symptoms to improve quality of life, have advanced communication skills and perform distinct clinical practices (e.g. working with the whole family as the unit of care and providing support in complex bereavement). Non-specialist palliative care involves discussions around futile or burdensome treatments, and care for people who are dying. Conclusions Areas of connection were identified: clinicians from disease-specific specialties should be more involved in leading discussions on futile or burdensome treatment and providing care to people in their last months and days of life, in collaboration with specialists in palliative care when required. What is known about the topic? At present there is no evidence-based definition or agreement about what constitutes specialist palliative care (as opposed to palliative care delivered by non-specialists) in the Australian Capital Territory. An agreed definition is needed to effectively determine the workforce required and its clinical skill mix, and to clarify roles and expectations to mitigate risks in not adequately providing services to patients with life-limiting conditions. What does this paper add? This paper offers, for the first time, an evidence-based definition that distinguishes specialist palliative care from non-specialist palliative care. End of life care and bereavement support are not just the remit of specialist palliative care clinicians. Clinicians from beyond specialist palliative care should lead discussions about futile or burdensome treatment. What are the implications for practitioners? The findings of this study can facilitate implementation of palliative care strategies by enabling practitioners and patients to distinguish who should be delivering what care.

Non-specialist palliative care: A principle-based concept analysis.

Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as 'generalist', 'basic' and 'a palliative approach' are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted. To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care. The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care. The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken. Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.

1-2-3 Project: A Quality Improvement Initiative to Normalize and Systematize Palliative Care for All Patients With Cancer in the Outpatient Clinic Setting.

Prior work to integrate early palliative care in oncology has focused on patients with advanced cancer and primarily on palliative care consultation. We developed this outpatient clinic initiative for newly diagnosed patients at any stage, emphasizing primary (nonspecialist) palliative care by oncology teams, with enhanced access to palliative care specialists. We piloted the project in two medical oncology specialty clinics (for patients with myelodysplastic syndrome and GI cancer, respectively) to establish feasibility. On a visit-based schedule, patients systematically reported symptoms, information/decision-making preferences, and illness understanding. They also participated in discussions of their core values with their oncology nurse. Oncology teams were first responders to palliative care needs, whereas specialists were available for clinician support and direct patient consultation. All 58 eligible patients were enrolled. In both clinics, patient self-reports documented a heavy symptom burden. Information/decision-making preferences and illness understanding levels varied across patients. Patients prepared new advance directives. Oncology nurses documented discussions of core values. Requests for palliative care consultation decreased over time as oncology teams embraced their primary palliative care role with coaching from the specialists. Clinic workflow and patient volume were maintained. Our pilot experience suggests that in outpatient oncology clinics, a structured, scheduled, and systematic approach is feasible to deliver palliative care to newly diagnosed patients with cancer at any stage and throughout their illness trajectory. This novel approach identified important, actionable palliative care needs, relying primarily on oncology teams to respond to these needs, while enhancing access to palliative care specialist input. Expansion to additional clinics will allow evaluation of scalability and generalizability, along with measurement of a broader range of important outcomes.

Palliative Care Is Part of Everyone's Job - The Education and Training Needs of Non-Specialist Palliative Care (NSPC) Practitioners; Findings From a Concept Analysis

It is widely acknowledged that palliative care should be embedded in everyday practice and that healthcare professionals who have direct contact with patients should have at least basic knowledge of palliative care. Internationally, different terms are used to describe non-specialist palliative care (NSPC), including generalist palliative care, a palliative care approach and primary palliative care. However, these terms do not necessarily mean the same thing to all involved. This may impact on the education and training of healthcare professionals in NSPC delivery.

P-36 A personal narrative of how a junior doctor in the post of education fellow approached the design and implementation of a multidisciplinary end-of-life care pilot training programme at a london hospital foundation trust

Background Junior doctors often have limited opportunities to develop the professional skills required to manage educational projects. As a junior doctor, I describe how in the role of education fellow, I approached the design and implementation of a multidisciplinary end-of-life care pilot training programme for non-specialist palliative care healthcare professionals (HCP) at a London hospital foundation trust. Methods During this post, I designed, implemented and coordinated a pilot programme consisting of seven half day training sessions. Preparation including a literature search, liaising with educators for advice and arranging meetings with healthcare leads within the Trust helped lay the foundations of the programme. I also elected to undertake a PGCert in Medical Education in order to further develop my understanding of pedagogical theory. Working with a steering group, key challenges were identified and strategies devised, which led to the team-based simulation course design. Following the pilots, important considerations have been sustainability and continued development. Results A total of 57 participants consisting of 15 consultants, 11 registrars, 14 therapists and 17 nurses attended the course from a range of medical and surgical specialties. Preliminary feedback has been positive and further sessions will run in 2017. This task posed an entirely new set of challenges to me and resulted in improved problem-solving and management skills which contributed to the success of the pilot. Conclusions Key priorities for pilot training programmes include participant recruitment and achieving expected learning outcomes. Having been successful in these domains future challenges for this programme will be ensuring sustainability and continued improvement. Posts such as this, pose different challenges to those seen in junior doctors’ traditional clinical roles. Project planning and associated tasks provide valuable experiences that aid in the development of other essential skills required at more senior level. These initiatives also provide unique opportunities that could influence the direction of many future careers.

Patient, nursing and medical staff experiences and perceptions of the care of people with palliative esophagogastric cancer: a systematic review of the qualitative evidence.

Esophagogastric cancer is the fifth most common malignancy and its incidence is increasing. The disease progresses quickly and five-year survival rates are poor. Treatment with palliative intent is provided for the majority of patients but there remains a lack of empirical evidence on the most effective service models to support esophagogastric cancer patients. The overall objective of this systematic review was to synthesize the best available evidence on the experiences and perceptions of patients and health professionals with regard to the care of people diagnosed with palliative esophagogastric cancer. The review considered studies that included patients diagnosed with palliative esophagogastric cancer and any health professionals involved in the delivery of palliative care to this patient group in a hospital, home or community setting. The review considered studies that investigated the experiences and perceptions of people diagnosed with palliative esophagogastric cancer and staff working with these people. Studies that were carried out in any setting, including in-patient and outpatient areas, specialist cancer and non-specialist palliative care services and those were any patient were in receipt or had experiences of palliative care services were considered. All types of health practitioners delivering palliative care to esophagogastric cancer patients were considered. Studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, feminist research and narrative approaches were considered. Mixed methods studies were considered in the review only if qualitative findings were reported separately. A three-step search strategy was utilized. A total 11 databases were searched for studies from 2000 onward, followed by hand searching of reference lists. Methodological quality was assessed using the Joanna Briggs Institute Qualitative Assessment and Review Instrument critical appraisal tool (JBI-QARI). Qualitative findings were extracted using the JBI-QARI data extraction Instrument. Qualitative research findings were pooled using a pragmatic meta-aggregative approach. The review included two publications. There were 46 findings which were aggregated into four categories and one overall synthesized finding: "In addition to support for physical needs, patients need support that takes into account changing life situations to achieve the best quality of life." The review shows that patients value services and support that addresses their complex, fluctuating and highly individual needs. No evidence was uncovered regarding how these services should be designed and delivered.

Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project.

Palliative care seeks to improve the quality of life for patients suffering from the impact of life-limiting illnesses. Palliative care encompasses but is more than end-of-life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non-specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non-specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end-of-life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care.

The withdrawal of the Liverpool Care Pathway in the United Kingdom: what are the implications for Australia?

This Perspective reflects on the withdrawal of the Liverpool Care Pathway in the UK, and its implications for Australia. Integrated care pathways are documents which outline the essential steps of multidisciplinary care in addressing a specific clinical problem. They can be used to introduce best clinical practice, to ensure that the most appropriate management occurs at the most appropriate time and that it is provided by the most appropriate health professional. By providing clear instructions, decision support and a framework for clinician-patient interactions, care pathways guide the systematic provision of best evidence-based care. The Liverpool Care Pathway (LCP) is an example of an integrated care pathway, designed in the 1990s to guide care for people with cancer who are in their last days of life and are expected to die in hospital. This pathway evolved out of a recognised local need to better support non-specialist palliative care providers’ care for patients dying of cancer within their inpatient units. Historically, despite the large number of people in acute care settings whose treatment intent is palliative, dying patients receiving general hospital acute care tended to lack sufficient attention from senior medical staff and nursing staff. The quality of end-of-life care was considered inadequate, therefore much could be learned from the way patients were cared for by palliative care services. The LCP was a strategy developed to improve end-of-life care in cancer patients and was based on the care received by those dying in the palliative care setting.

Oral care in nursing practice: a pragmatic representation

Oral care for patients receiving non-specialist palliative care has been reported to be lacking in several respects. The present study explored the oral care social representation of nurses and health-care assistants providing non-specialist palliative care. A mixed methodology utilising a questionnaire and focus groups was adopted. The research identified difficulties in providing oral care in this setting. The participants reported managing their emotions around carrying out oral care. They had resources available and were convinced of the positive effects. However, their personal efficacy needed to be reinforced and they needed to receive positive feedback.

The Liverpool Care Pathway: does it improve quality of dying?

The Liverpool Care Pathway (LCP) for the dying patient is an integrated care pathway that was developed to assist non-specialist palliative care staff care for dying patients in acute clinical areas. The LCP has generated numerous debates among health professionals regarding its strengths and weaknesses. The complexity of patient needs at the end-of-life cannot be underestimated and the LCP provides the foundations of quality evidence-based care patients require, particularly in the final phase of dying. Nevertheless, not all health professionals are in agreement as to the advantages of using integrated care pathways in clinical practice. Despite the attention that has surrounded the LCP there is limited evidence to suggest that it improves end-of-life care. This article examines the evidence in relation to the LCP as a tool to improve palliative care for dying patients and their families in non-specialized palliative care practice.

It just didn’t work: the realities of quality assessment in the English health care context

Aims: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure. Method: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences. Results: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses’ accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients. Conclusions: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.