Experience of care from the perspectives of inpatients with palliative care needs: a cross-sectional study using a patient reported experience measure (PREM).

BACKGROUND: Improving palliative care for inpatients is urgently needed. Data from patient-reported experience measures (PREM) can assist in identifying areas for focused improvement. This study aimed to describe patient reported experience of care in inpatients with palliative care needs, to inform a baseline understanding of care experience and identify key areas for improvement. METHODS: Cross-sectional study design where inpatients with palliative care needs were invited to complete 'consideRATE,' a patient reported experience measure of care, over six months in 2022. Inpatients with palliative care needs receiving care on an oncology, general medicine/renal and general medicine/respiratory ward (n = 3) at an Australian metropolitan hospital were screened for eligibility. Carers could provide proxy responses where inpatients were unable to participate. Descriptive statistics were used to analyse quantitative ratings, whilst free text responses were analysed using integrated thematic analysis. RESULTS: One-hundred and twenty participants (108 patients and 12 carers) completed consideRATE. The questions with the highest number of 'very good' responses were attention to symptoms, attention to feelings and attention to what matters most; the questions with the lowest number of 'very good' responses was attention to patients' affairs, what to expect, and the environment of care. Almost half (n = 57, 48%) indicated that attention to patients' affairs 'did not apply' to their inpatient stay. Analysis of 532 free text responses across 8 questions highlighted the importance of feeling supported, feeling informed, feeling heard and navigating the clinical environment. CONCLUSION: Enabling inpatients with palliative care needs to provide feedback about their experience of care is one method of ensuring improvements matter to patients. Supporting clinical teams to understand and use these data to make tailored improvements is the next step in this multi-phase research.

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study.

BACKGROUND: Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. AIM: To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding the use of a generic PREM as compared with a PREM designed for people with palliative care needs and related implementation factors. DESIGN: A qualitative study was undertaken using semi-structured interviews and focus groups and integrated thematic analysis. SETTING/PARTICIPANTS: Inpatients with palliative care needs, their family members, and clinical team members were recruited from three wards in an Australian metropolitan hospital. RESULTS: Twenty-seven interviews and three focus groups were conducted. Six themes emerged: (1) PREMs for people with palliative care needs ought to be tailored to the needs of this population; (2) PREMs should appraise whether the needs of families have been met in addition to those of patients; (3) PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question; (4) Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; (5) PREM data need to be specific enough to inform process change and/or care provision; (6) Patients and families require meaningful feedback to encourage PREM completion. CONCLUSIONS: This study provides practical guidance for PREM selection and implementation to inform improvements to care for inpatients with palliative care needs.

Evidence-based models of rural palliative care: A systematic review.

BACKGROUND: Forty-five percent of the world's population lives in rural areas, yet their access to palliative care is quite limited. Identifying the care elements rural populations with palliative care needs require is critical to improving care outcomes. AIM: To identify the key care elements that optimise palliative care for people in rural communities. DESIGN AND DATA SOURCES: A systematic review of articles studying the impact of novel rural model of care interventions was undertaken in May 2022. This study is reported using the PRISMA Statement and was registered with Prospero (CRD42020154273). Three databases were searched, and the data analysed according to Popay's narrative synthesis, and elements classified using the WHO Innovative Care for Chronic Conditions (ICCC) Framework. RESULTS: Of the 9508 identified papers, 15 met the inclusion criteria, reporting on 14 studies involving 1820 rural patients. Care received spanned 12/18 of the WHO ICCC Framework elements, with wide variability in how these elements were operationalised. The five elements that signal improved outcomes were: (1) Promote continuity and coordination; (2) Prepared, informed and motivated health care teams; (3) Prepared, informed and motivated patients and families; (4) Organise and equip health care teams and (5) Promote consistent financing. CONCLUSIONS: A well-coordinated multidisciplinary team approach, led by clinicians with specialist palliative care expertise, integrated across local health care settings, using information systems and care planning, is critical to optimising rural palliative care patient outcomes. Rural patients and their families require timely input from specialist palliative care clinicians and information to address their needs.Prospero registration ID: CRD42020154273 https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=154273.

Preferences for Palliative and End-of-Life Care: A Systematic Review of Discrete Choice Experiments.

OBJECTIVES: Understanding what matters most to patients and their caregivers is fundamental to delivering high-quality care. This systematic review aimed to characterize and appraise the evidence from discrete choice experiments eliciting preferences for palliative care. METHODS: A systematic literature search was undertaken for publications up until August 2022. Data were synthesized narratively. Thematic analysis was applied to categorize attributes into groups. Attribute development, frequency, and relative importance were analyzed. Subgroup analyses were conducted to compare outcomes between patient and proxy respondents. RESULTS: Seventeen studies spanning 11 countries were included; 59% of studies solely considered preferences for patients with cancer. A range of respondent groups were represented including patients (76%) and proxies (caregivers [35%], health providers [12%], and the public [18%]). A total of 117 individual attributes were extracted and thematically grouped into 8 broad categories and 21 subcategories. Clinical outcomes including quality of life, length of life, and pain control were the most frequently reported attributes, whereas attributes relating to psychosocial components were largely absent. Both patients and proxy respondents prioritized pain control over additional survival time. Nevertheless, there were differences between respondent cohorts in the emphasis on other attributes such as access to care, timely information, and low risk of adverse effects (prioritized by patients), as opposed to cost, quality, and delivery of care (prioritized by proxies). CONCLUSIONS: Our review underscores the vital role of pain control in palliative care; in addition, it shed light on the complexity and relative strength of preferences for various aspects of care from multiple perspectives, which is useful in developing personalized, patient-centered models of care for individuals nearing the end of life.

Description of patient reported experience measures (PREMs) for hospitalised patients with palliative care needs and their families, and how these map to noted areas of importance for quality care: A systematic review.

BACKGROUND: The global need for focused improvements in palliative care within the acute hospital setting is well noted. A large volume of evidence exists detailing what hospitalised patients with palliative care needs and their families note as important for high quality care. Patient Reported Experience Measures (PREMs) are one mechanism that hospitals could use to inform improvement work. To date there has not been a review of PREMs available for hospitalised patients with palliative care needs and/or their family, nor how they align with noted priorities for high quality care. AIM: To identify and describe PREMs designed for hospitalised patients with palliative care needs and their families; and their alignment with patient and family identified domains for high quality care. DESIGN: A systematic review. DATA SOURCES: A systematic search of CINAHL, Medline and PsycInfo was conducted up to September 23, 2022 and supplemented by handsearching article reference lists and internet searches. PREMs written in English and designed for patients with palliative care needs in acute hospitals were eligible for inclusion. Included PREMs were described by: summarising key characteristics; and mapping their items to domains noted to be important to hospitalised patients with palliative care needs and their families informed by outcomes from a published study completed in 2021. Evidence for psychometric properties were reviewed. RESULTS: Forty-four PREMs with 827 items were included. Items per PREM varied from 2 to 85 (median 25, IQR 13-42). Two-thirds (n = 534, 65%) of the items were designed for families and a third (n = 283, 34%) for hospitalised patients, and very few (n = 10, 1%) for both. Sixty-six percent of items measured person-centred care, 30% expert care and 4% environmental aspects of care. Available PREMs address between 1 and 11 of the 14 domains of importance for quality palliative care. PREMs had a median of 38% (IQR 25.4-56.3) of items >Grade 8 measured by the Flesch-Kincaid readability test, with Grade 8 or lower recommended to ensure health information is as accessible as possible across the population. CONCLUSIONS: Whilst 44 PREMs are available for hospitalised patients with palliative care needs or their families, a varied number of items are available for some domains of care provision that are important, compared to others. Few are suitable for people with lower levels of literacy or limited cognitive capacity due to illness.

Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.

BACKGROUND: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. AIM: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. DESIGN: An exploratory qualitative study, using semi-structured interviews. SETTING/PARTICIPANTS: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. RESULTS: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. CONCLUSIONS: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.

Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study.

BACKGROUND: Patient-reported experience measures (PREMs) are questionnaires that ask patients about their experience of healthcare to inform service improvements. It is unclear how palliative care patients manage the cognitive demands of completing PREMs, or how this can best be supported. This study aimed to explore cognitive operations among people with palliative care needs when completing a PREM focused on the care domains known to be important to this patient population in order to inform future administration of questionnaires for this purpose. METHODS: A qualitative approach was taken, using cognitive interviews. Participants were people receiving specialist palliative care with stable disease who were not bedbound. Interviews used 'think aloud' and verbal probes to explore the cognitive operations of comprehension, recall, judgement and response to a 33-item PREM, drafted using a standard process employed by the New South Wales Bureau of Health Information. Analysis proceeded first within- and then cross-cases to explore patterns. RESULTS: Fifteen people participated, all of whom had cancer except one with motor neuron disease. Six discussed inpatient care, and nine community care. Participants encountered challenges with all four cognitive operations. Many participants were unfamiliar with end-of-life care concepts like declining treatment and advance care planning. Participants often struggled to remember, answered hypothetically, or digressed beyond the focal setting. Few participants used the mid-point on a 3-point scale. However, all participants could complete two open-ended items on care aspects they regarded as 'best' or 'most needs improving'. CONCLUSIONS: Palliative care patients find PREMs challenging to complete and require supports to improve the quality and interpretability of data. Pending further research, tentative suggestions are made for PREM design and administration for this patient population.

The development and evaluation of an integrated virtual patient case study and related online resources for person-centred nursing practice.

Ensuring students develop person-centred practice for diverse groups of people across health care settings is an important outcome of undergraduate nursing education. This paper presents the development and evaluation of a learning innovation, an integrated virtual patient case study and complementary online resources for person-centred nursing practice. The virtual patient case study of an Australian Aboriginal woman diagnosed with breast cancer was integrated within four core subjects of a Bachelor of Nursing program, for a total of 600 second-year students. The evaluation of this learning strategy was encouraging. Students reported that the online learning activities were engaging, particularly due to the level of realism, their understanding of Aboriginal Peoples' healthcare needs increased, and they developed therapeutic communication skills, applicable in a variety of healthcare contexts. Staff concerns about student wellbeing when learning sensitive content online were unfounded. When carefully planned, a virtual patient case study and online learning resources can support students to enhance their person-centred nursing practice. Further evaluation, including student outcomes through assessment, is an important next step.

Hospital patients' perspectives on what is essential to enable optimal palliative care: A qualitative study.

BACKGROUND: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. AIM: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. DESIGN: An exploratory qualitative study using semi-structured interviews. SETTING/PARTICIPANTS: Participants were recruited through five hospitals in New South Wales, Australia. RESULTS: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. CONCLUSIONS: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.

Identifying and assessing the needs of carers of patients with palliative care needs: an exploratory study.

BACKGROUND:: Carers of patients with palliative care needs require careful assessment and support to undertake their role effectively. The carer component of palliative care is embedded in complex situations that necessarily focus on the patient. AIMS:: To explore experiences of specialist palliative care nurses in identifying, assessing and planning care to support those looking after patients with palliative care needs. RESULTS:: Findings identified gaps in identifying carers and their role, and in assessing carers' needs. CONCLUSIONS:: This study confirmed the complexity in assessing carers' needs within the palliative care context, that practice gaps exist and positive outcomes result when routine processes were adopted. Future research should explore how to systematically make improvements in supporting carers in all palliative care contexts, including specialist and non-specialist settings.

National quality indicators and policies from 15 countries leading in adult end-of-life care: a systematic environmental scan.

BACKGROUND: The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision. METHODS: A systematic environmental scan that included a web search to identify relevant national policies and indicators; hand searching for additional materials; information from experts listed for the top 10 (n=15) countries ranked in the 'quality of care' category of the 2015 Quality of Death Index study; and snowballing from Index experts. FINDINGS: Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%). INTERPRETATIONS: Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families.

Dying in the hospital setting: A meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important.

BACKGROUND: Despite most expected deaths occurring in hospital, optimal end-of-life care is not available for all in this setting. AIM: To gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting. DESIGN: A meta-synthesis. DATA SOURCES: A systematic search of Academic Search Complete, AMED, CINAHL, MEDLINE, EMBASE, PsycINFO, PubMed, Google, Google Scholar and CareSearch for qualitative studies published between 1990 and April 2015 reporting statements by consumers regarding important elements of end-of-life hospital care. Study quality was appraised by two independent researchers using an established checklist. A three-stage synthesis approach focusing on consumer quotes, rather than primary author themes, was adopted for this review. RESULTS: Of 1922 articles, 16 met the inclusion criteria providing patient and family data for analysis. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and (4) enabling patient choice at the end of life. CONCLUSION: Consumer narratives help to provide a clearer direction as to what is important for hospital end-of-life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care.

Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important.

BACKGROUND: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. AIM AND DESIGN: This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. DATA SOURCES: Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. RESULTS: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. CONCLUSION: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.

Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach.

BACKGROUND: Models of palliative care need to address the unmet needs of children, young people and families. OBJECTIVE: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents. DATA SOURCES: Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies. STUDY SELECTION: Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion. DATA EXTRACTION AND SYNTHESIS: Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach. RESULTS: Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24h specialist support, respite care and sibling support. CONCLUSIONS: Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.

Elements of effective palliative care models: a rapid review.

BACKGROUND: Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. METHOD: A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). RESULTS: Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals' changing needs and preferences over time. CONCLUSION: Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia's health system.