Optimising care for People with palliative care needs, and their families, in the Australian hospital setting: the OPAL Project

University of Technology Sydney. Faculty of Health.Demand for palliative care provision within hospitals is significant and projected to increase in line with the population ageing and an increase in non-communicable disease. However, not all Australian inpatients with palliative care needs have access to best evidence-based quality care. Understanding how to optimise care for this population is a global priority. To identify how to optimise care for people with palliative care needs and their families in the Australian hospital setting. A three phase fully mixed sequential dominant design. The OPAL Project is informed by pragmatic assumptions and the Innovative Care for Chronic Conditions and Person-centred Practice Frameworks. Phase 1 focused on scoping the problem and involved a systematic review and meta-synthesis of the needs of inpatients with palliative care needs and their families (Studies 1a and b). Phase 2 involved a qualitative interview study with patients and families to better understand domains of importance, their implications for practice and relevance for the Australian population (Study 2). A mid-point meta-inference of data obtained across Studies 1a, 1b and 2 followed, to inform Phase 3 and project conclusions. Phase 3 included a global environmental scan (Study 3) and a co-design workshop (Study 4) focused on understanding how to drive reform in relation to Australian inpatient palliative care. The end-point meta-inference drew together all of the OPAL Project’s data to generate a series of recommendations. The OPAL Project identified that Person-centered care, Expert care and Optimal environment of care are the three overarching categories of importance to inpatients with palliative care needs and their families. Within each of these three categories are specific care-related domains (n=14) and a series of practice points (n=68), that provide guidance at the macro, meso and micro levels. The end-point meta-inference identified five key drivers for embedding the categories and domains identified in the OPAL Project, including: recognising and valuing palliative care as core business and a priority for inpatient care; leadership; measurement; innovation; and targeted skill development to support clinicians and ancillary staff in their delivery of palliative care. Improving inpatient palliative care requires a concerted effort to enable the implementation of strategies aligned with the care that matters most to inpatients with palliative care needs and their families. The OPAL Project provides a robust platform for clinicians, health administrators and policy experts to re-orient their inpatient palliative care policy focus, improvement indicators and skill development on what matters most to inpatients and families with palliative care needs. System-level improvement will only occur with discrete but interrelated work undertaken in partnership with all stakeholders, including palliative care consumers, at the macro (national), meso (hospital) and micro (ward) levels

Integrating genomics into the care of people with palliative needs: A global scoping review of policy recommendations

BACKGROUND: Genomics has growing relevance to palliative care, where testing largely benefits relatives. Integration of genomics into the care of patients with palliative care needs has not received the critical attention it requires, and health professionals report a lack of policy guidance to support them to overcome practice barriers. SUMMARY: To identify policy recommendations related to: (1) integrating genomics into the care of patients with palliative care needs and their families, and (2) care of the family unit, we performed a scoping review of palliative care and genomic policies. Two of 78 policies recommended integrating genomics into palliative care. Six palliative care policies mentioned genomics in background information but were without relevant recommendations. No genomics policies mentioned palliative care in the background information. Across all policies, guidance related to “Delivering Family-Centred Care” was the most frequent recommendation related to care of the family unit, (n=62/78, 79.5%). KEY MESSAGES: We identified a policy gap related to integrating genomics into palliative care. Without policy guidance, health services are less likely to commit funding towards supporting health professionals, reducing the personal and clinical benefits of genomics to patients and relatives. Framing genomic information as family-centred care enables policy makers to communicate the value of genomics to palliative care that will resonate with genomic and palliative care stakeholders. These findings increase awareness among policy makers of the benefits of genomic information to patients with palliative care needs and their families and call for incorporation of appropriate recommendations into palliative care and genomic policy

Driving quality in delirium care through a patient-centered monitoring system in palliative care: Protocol for the two-staged exploratory sequential mixed methods MODEL-PC study

IntroductionDelirium is a serious acute neurocognitive condition that is common in palliative care units and yet under-addressed. To improve delirium care in this setting, we will develop and pilot a monitoring system that integrates the Delirium Clinical Care Standard, Palliative Care Outcomes Collaboration (PCOC) methods, and perspectives of patients, carers and staff.MethodsThis paper reports the protocol for a two-stage, exploratory, sequential mixed-methods implementation study. Stage 1 data collection includes Delirium Standard-aligned process mapping and clinical audits, and Critical Incident Technique interviews with patients, carers and staff with a recent experience of delirium. We will present integrated stage 1 findings to stakeholders then collaboratively develop a delirium monitoring system that aligns with the Delirium Standard and PCOC methods. In stage 2, we will pilot the new system and repeat stage 1 data collection and analyses, adding PCOC and adverse event measures. Implementation principles and strategies such as audit and feedback and education will be applied. We developed simplified participants information sheets and consent forms for interview and process mapping participants, who will provide written informed consent; and waiver of consent to collect clinical audit, PCOC and adverse event data from patients’ medical records is approved. At study end, we will report implementation, effectiveness and safety outcomes, including systemic utility of the delirium monitoring system for wider testing and use to meet the Delirium Standard in palliative care units. Quantitative data analyses will include descriptive and inferential statistics and qualitative analyses will incorporate thematic content analysis aligned to the Critical Incident Technique. Mixed methods data integration will be at the end of each stage.DiscussionThis protocol paper describes the mixed methods, systems integration, and innovative measures and study processes of the MODEL-PC study. We also share data collection tools and a simplified information sheet and consent form for patients

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</p

Optimising care for People with palliative care needs, and their families, in the Australian hospitaL setting: the OPAL Project

Background:Demand for palliative care provision within hospitals is significant and projected to increase in line with the population ageing and an increase in non-communicable disease. However, not all Australian inpatients with palliative care needs have access to best evidence-based quality care. Understanding how to optimise care for this population is a global priority.Aim:To identify how to optimise care for people with palliative care needs and their families in the Australian hospital setting.Methods:A three phase fully mixed sequential dominant design. The OPAL Project is informed by pragmatic assumptions and the Innovative Care for Chronic Conditions and Person-centred Practice Frameworks. Phase 1 focused on scoping the problem and involved a systematic review and meta-synthesis of the needs of inpatients with palliative care needs and their families (Studies 1a and b). Phase 2 involved a qualitative interview study with patients and families to better understand domains of importance, their implications for practice and relevance for the Australian population (Study 2). A mid-point meta-inference of data obtained across Studies 1a, 1b and 2 followed, to inform Phase 3 and project conclusions. Phase 3 included a global environmental scan (Study 3) and a co-design workshop (Study 4) focused on understanding how to drive reform in relation to Australian inpatient palliative care. The end-point meta-inference drew together all of the OPAL Project’s data to generate a series of recommendations. Results:The OPAL Project identified that Person-centered care, Expert care and Optimal environment of care are the three overarching categories of importance to inpatients with palliative care needs and their families. Within each of these three categories are specific care-related domains (n=14) and a series of practice points (n=68), that provide guidance at the macro, meso and micro levels. The end-point meta-inference identified five key drivers for embedding the categories and domains identified in the OPAL Project, including: recognising and valuing palliative care as core business and a priority for inpatient care; leadership; measurement; innovation; and targeted skill development to support clinicians and ancillary staff in their delivery of palliative care. Conclusion:Improving inpatient palliative care requires a concerted effort to enable the implementation of strategies aligned with the care that matters most to inpatients with palliative care needs and their families. The OPAL Project provides a robust platform for clinicians, health administrators and policy experts to re-orient their inpatient palliative care policy focus, improvement indicators and skill development on what matters most to inpatients and families with palliative care needs. System-level improvement will only occur with discrete but interrelated work undertaken in partnership with all stakeholders, including palliative care consumers, at the macro (national), meso (hospital) and micro (ward) levels

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. <br/

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

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.</p

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.</p

Generating key practice points that enable optimal palliative care in acute hospitals: Results from the OPAL project\u27s mid-point meta-inference

Background: Internationally, the epidemiology of dying is changing with people dying at an older age from an expected death and with complex health care needs. An increasing proportion of people require hospital care with the need to strengthen the quality of this care well-articulated. Evidence about what enables optimal inpatient palliative care is available. Articulating how to enable this within clinical practice is required. Objective: To investigate the domains of care that are most important to inpatients with palliative care needs and their families, to generate key practice points to inform optimal clinical care provision. Design: A mid-point meta-inference of the Opal Project\u27s data. The three phase Opal Project utilised a fully mixed sequential dominant design (Quan → QUAL). Phase 1 focused on ‘scoping the problem’ through a systematic review and meta-synthesis of important aspects of care for inpatients with palliative care needs and their families (studies 1a and 1b); Phase 2 focused on ‘understanding importance’ through a qualitative interview study (study 2); and a mid-point meta-inference of data obtained across Studies 1a, 1b and 2. Phase 3 included a global environmental scan (Study 3) and co-design workshop (Study 4) focused on understanding how to drive reform for Australian inpatient palliative care, based on outcomes from the mid-point meta-inference; and an end-point meta-inference to generate final recommendations. Methods: Mid-point meta-inference of data obtained across Phases 1 and 2 involving: 1) verifying synthesis of data with palliative care consumers and clinical leaders; and 2) populating joint display tables to inform analysis and generate practice points. Results: Three categories and 14 domains informing optimal inpatient palliative care were identified: 1) Person-centred care including respectful and compassionate care; effective communication and shared decision making; effective teamwork; enabling family involvement; and maintaining role, meaning and identity; 2) Expert care including excellence in physical care; impeccable assessment and care planning; effective symptom management; technical competence; patient safety; and supported access to senior clinicians; and 3) Optimal environment for care including patient and family focused structural factors; and cleanliness to support infection control. Data integration generated 68 practice points informing care provision. Conclusions: Through a synthesis of patient and family perspectives about what is important for optimal inpatient palliative care, this study confirmed three categories of care, 14 domains of importance and 68 practice points. Importantly, these practice points guide clinical practice to enable each domain of care in practice. Tweetable abstract: We know what patients with palliative care needs, and their families need for good care when they are in hospital. It is time to deliver care in line with these needs