Specialist Palliative Care Services Research Articles

Study protocol for the development and validation of a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia.

Patients with dementia and their caregivers could benefit from advance care planning though may not be having these discussions in a timely manner or at all. A prognostic tool could serve as a prompt to healthcare providers to initiate advance care planning among patients and their caregivers, which could increase the receipt of care that is concordant with their goals. Existing prognostic tools have limitations. We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. The derivation cohort will include approximately 235,000 patients with dementia, who were admitted to hospital in Ontario from April 1st, 2009, to December 31st, 2017. Predictor variables will be fully prespecified based on a literature review of etiological studies and existing prognostic tools, and on subject-matter expertise; they will be categorized as follows: sociodemographic factors, comorbidities, previous interventions, functional status, nutritional status, admission information, previous health care utilization. Data-driven selection of predictors will be avoided. Continuous predictors will be modelled as restricted cubic splines. The outcome variable will be mortality within 1 year of admission, which will be modelled as a binary variable, such that a logistic regression model will be estimated. Predictor and outcome variables will be derived from linked population-level healthcare administrative databases. The validation cohort will comprise about 63,000 dementia patients, who were admitted to hospital in Ontario from January 1st, 2018, to March 31st, 2019. Model performance, measured by predictive accuracy, discrimination, and calibration, will be assessed using internal (temporal) validation. Calibration will be evaluated in the total validation cohort and in subgroups of importance to clinicians and policymakers. The final model will be based on the full cohort. We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. The model would be integrated into the electronic medical records of hospitals to automatically output 1-year mortality risk upon hospitalization. The tool could serve as a trigger for advance care planning and inform access to specialist palliative care services with prognosis-based eligibility criteria. Before implementation, the tool will require external validation and study of its potential impact on clinical decision-making and patient outcomes. NCT05371782.

Impact of the COVID-19 pandemic on the use of an inpatient and community palliative care service.

The COVID-19 pandemic disrupted the usual provision of healthcare, changing models of care, clinical loads, service provision and patient behaviour. This study assesses the impact of COVID-19 on community and inpatient palliative care service provision. A retrospective audit and comparison of service use conducted over two defined periods, before and during the COVID-19 pandemic, 2019-2020. The community palliative care service had a 9% increase in referrals, with a lower proportion of referrals (2.4%) from subacute/palliative care hospitals during the COVID-19 pandemic. Provision of care during the pandemic included less face-to-face contact with patients (24.1% versus 30.2% before), and markedly more contact with patients via videoconference (2.1% versus 0.1% before the pandemic). The community specialist palliative care service was busier during the pandemic period, and experienced a shift in mode of care delivery, while the inpatient unit experienced no difference in service use.

The value equation for specialist palliative care: design and delivery principles.

The value of specialist palliative care (SPC) is multi-faceted. Patients, families, healthcare providers, health systems and payors all benefit in different ways when SPC is included in the care of those with serious illness; they all have a shared interest in the availability and success of SPC. We propose a new value equation for SPC: SPC services must employ optimal design and standardized delivery of SPC to ensure that the payment model, care model, and needs of the patients are all aligned; and suitable payment models are necessary to provide stable, sustainable resources for the interdisciplinary palliative care teams; when these conditions are met, the cascade of beneficial outcomes of SPC can be produced reliably. We propose a set of 10 design and delivery principles describing these inputs and outcomes, applicable to SPC in all settings-hospital, clinic, and home. Amidst shifts in health policy and financing, the SPC field in the US continues to evolve with new innovations, additional evidence, and a clearer vision of what is valuable. An enduring component of the value equation of SPC continues to be the moderation of the total cost of care for payors. This articulation of the value equation for SPC is based on evidence and experience of palliative care providers and payors in the US, but the framework and principles are likely useful to guide and evaluate SPC in other countries as well.

COVID-19 and End of Life in a Quaternary Australian Hospital: Referral for Palliative Care Consultation.

The coronavirus disease 2019 (COVID-19) pandemic resulted in complex physical and psychosocial symptom burden at end of life. The benefit of specialist palliative care input in other disease states has been established, however, there is little evidence on referral patterns to these services in patients dying from COVID-19. This retrospective audit investigated the referral patterns for patients who died from COVID-19 at a quaternary hospital in South Australia (the Royal Adelaide Hospital) over a six-month period in 2022, and whether demographic features or COVID-19 specific factors had an impact on whether these patients received specialist palliative care services (PCS). The second aim was to identify prescription patterns for patients in the last 24 hours of life, and whether this was impacted by referral. Data were obtained from electronic medical records and analyzed using binary logistic regressions for referral to PCS versus no referral based on various predictors. There was no significant difference comparing patient demographics or COVID-19 specific factors with referral to PCS. There was statistical significance between patients who received referral to PCS and those who had a higher oral morphine equivalent daily dose (OMEDD) in the 24 hours before death, as well as the presence of a continuous subcutaneous infusion. Although the cause of this relationship is undetermined, it may represent the prescription patterns of the palliative care physicians during consultation or potentially higher symptom burden prompting referral. There was also a higher proportion of patients who received hydromorphone compared with other opioids, though the OMEDD was consistent with other published literature.

Development and implementation of the Specialist Palliative Care in Aged Care (SPACE) Project across Queensland.

There is an urgent and unmet need for specialist palliative care services in residential aged care. The Specialist Palliative Care in Aged Care (SPACE) Project aimed to improve palliative and end-of-life care for older people living in residential aged care facilities in Queensland. A representative working group developed a series of service principles around palliative care practice in aged care (comprehensive resident-focused care, streamlined service, and capacity building). Funding was allocated by population to the health services in Queensland to adapt and implement models of care aligned with these principles. SPACE successfully implemented a variety of decentralised models of care across Queensland. The critical elements for the success of SPACE were the use of an expert working group to define the core innovation, networking and implementation support from the central project team and community of practice, and adaptable models of care led by local facilitators. Lessons learned from this real-world case study could be adopted to guide and ensure the successful implementation and sustainability of future complex interventions in healthcare settings, both nationally and internationally.

Exploring the 'citizen organization': an evaluation of a regional Australian community-based palliative care service model.

Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'. This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services. A co-designed evaluation approach utilizing mixed-method design is used. Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated. This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community. All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept.

USING MULTI-LEVEL MODELING TO EXAMINE RACIAL DISPARITIES IN PALLIATIVE CARE AMONG OLDER ADULTS WITH HEART FAILURE

Abstract Studies have found persistent disparities in guideline-concordant cares for heart failure among patients who self-identify as Black. We investigated how the guideline-concordant specialist palliative care (SPC) varied with race among older adults with advanced heart failure (AHF). We identified 16,464 older adults aged ≥65y (median: 74y) with AHF by ICD-9/10 codes seen between 1/1/2018-7/1/2020 in 83 Veterans Affairs Medical Centers (VAMC). In conventional logistic regression without accounting for between-VAMC variation, Black (28%) race was less likely to receive SPC services than White (70%) race [adjusted odds ratio (aOR) of 0.91 (95% Confidence Intervals (CI): 0.84,0.99); predicted probability: 27.6% vs. 29.5%], independent of age, sex and comorbidity. This association diminished to null [aOR: 0.99 (95% CI: 0.90,1.08)] after adding a random intercept for VAMCs (multi-level model (MLM)). Expanding the MLM with specific VAMC characteristics (SPC team staffing (p< 0.05), facility complexity and urbanicity) as fixed effects improved overall model fit (area under ROC: 0.68 vs 0.61, p< 0.05), and accounted for 17% of the VAMC-level variance (intraclass correlation coefficient: 0.069 vs 0.083). There were no cross-level interactions between race and VAMC characteristics. These findings suggest that variation in the individual probability of receiving SPC between Black and White race in this older AHF cohort may be partially explained by between-VAMC differences in SPC staffing and other facility characteristics. To promote equitable access to SPC for older adults with AHF, further research is needed to examine service delivery characteristics and broader contextual determinants of health, such as area socioeconomic disparity of healthcare facilities

Palliative care for infants with life-limiting conditions: integrative review

BackgroundInfants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not...

Current definitions of advanced multimorbidity: a protocol for a scoping review

IntroductionPeople living with and dying from multimorbidity are increasing in number, and ensuring quality care for this population is one of the major challenges facing healthcare providers. People with multimorbidity...

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

Patient and caregiver reciprocal support: Impact on decision making in specialist palliative care.

Patients and informal caregivers in palliative care can reciprocate in supporting one another. However, how reciprocal support among patients and informal caregivers in palliative care impacts on their decision making for care is not well understood. To identify how reciprocal support among patients with advanced illness and their informal caregivers in specialist palliative care impacts on their decision making for care. Between July 2021 and May 2022, 30 qualitative interviews were conducted with 14 patient and caregiver dyads, seven non-dyad caregiver participants and one non-dyad patient participant (total n=36), recruited from a large regional specialist palliative care service. Data were analyzed using Corbin and Strauss grounded theory method. Reciprocal support among patients and informal caregivers was underpinned by obligation and choice. Caregivers who felt obliged to care had difficulty communicating with the patient about the patient's preferences for care and their own wishes for patient care. Patients who felt obliged to accept support from their caregiver tended to minimize caregiver participation in decision making which made caregivers feel disempowered in discussions about patient care. Caregivers tended to be more involved in decision making when caregivers assumed caregiving duties by choice and when the patient did not feel restricted by their reliance on their caregiver. Open communication between patients and caregivers made patients more trusting of their caregiver. Patient and caregiver dyadic interventions in specialist palliative care involving decision making need to account for how obligation and choice manifest and function between the patient and caregiver.

Developing a generic business case for an advanced chronic liver disease support service

IntroductionLiver disease deaths are rising, but specialist palliative care services for hepatology are limited. Expansion across the NHS is required.MethodsWe surveyed clinicians, patients and carers to design an ‘ideal’ service....

The experiences of people with liver disease of palliative and end-of-life care in the United Kingdom-A systematic literature review and metasynthesis.

Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end-of-life care experiences of people with liver disease in the United Kingdom. A systematic review was conducted using a five-stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end-of-life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person-centred care as an important feature. This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person-centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end-of-life. An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic.

Global epidemiology of geriatric burns, capacities of care, and injury outcomes: Perspectives from the World Health Organization global burn registry

BackgroundAn increasing aging population alongside a potentially increasing injury risk emphasizes a critical need for evidence-based burn care regarding preventive and therapeutic strategies tailored to the unique needs of older adults. However, we note a critical gap in understanding geriatric burn trends on a global scale and the care capacity across settings. Thus, this study sought to ascertain the global trend of geriatric burns with a focus on patient demographics, injury characteristics, capacities of care, and injury outcomes. MethodsA retrospective design focusing on older adults aged ≥ 60 years with burns recorded in the World Health Organization Global Burn Registry as of 31st May 2023 was employed. Descriptive statistics were employed to analyze the data. ResultsOf the 9277 records obtained from the Global Burn Registry, 849 participants (9.2%) were aged ≥ 60 years with the majority of these reported from the Eastern Mediterranean (EMRO) and Southeast Asia (SEARO) regions. More females than males were involved in burn injuries with the most common aetiological factor being flame. Most burns occurred in the home/ domestic setting with a seasonal variation (more injuries occurred in December and January). In terms of burn care capacity, the data suggest the availability of specialized services in most settings albeit the AFRO and SEARO regions still lacked the resources to offer specialized burn care. While most injured older adults were discharged home with no physical impairment (395, 46.5%), a substantial number died (250, 29.4%) during hospitalization, particularly in the African (AFRO) region and 111 (11.1%) left the facility against medical advice with the majority from the SEARO region (88). ConclusionBurn injuries in older adults remain a public health issue. On the preventive aspect, the results demonstrate a need to intensify safety in the home or domestic setting, and during festive seasons. Therapeutically, the findings underscore a need to consider the inclusion of more specialist geriatric and palliative care services in the burn management process. Additionally, we identified a need to strengthen burn care capacity in the AFRO and SEARO regions.

Evaluating a specialist palliative care service in a community setting

Background/Aims In the Norfolk and Waveney Integrated Care System, a community organisation and a hospice have collaborated to develop an innovative specialist palliative care service in a community hospital. The aim of this service evaluation was to review the specialist palliative care service 2 years after implementation began across the integrated care system. Methods A multi-method approach was used to evaluate this service. Data were collected from pre-existing datasets on referrals, discharge and service use and described using descriptive statistics to assess how the service was used during the evaluation period (1 April 2019–31 March 2021). Qualitative data were collected via semi-structured interviews with 25 patients, carers, staff and other stakeholders. Interview transcripts were analysed using thematic analysis. Results During the 2-year evaluation period, the service recorded 1800 referrals, 189 admissions to specialist beds and 19 712 telephone calls to the 24-hour advice line. Thematic analysis of interview transcripts identified four themes: impact of the specialist palliative care beds, implementation of changes to practice, communication and coordination, and challenges related to providing the service. Overall, patients and carers had very positive views of the quality of care they received. Staff also identified benefits, including access to training and improved morale. Challenges included the limited number of beds and difficulties balancing the care needs of palliative care patients with other patients in the inpatient ward. Conclusions The specialist palliative care service promoted collaborative working, leading to enhanced knowledge and skills for staff supporting patients with specialist palliative care needs. The service was well-used and patients and their carers were generally very satisfied with the care they received.

Assessment and management of upper limb lymphoedema in advanced disease: a case study.

Lymphoedema is thought to affect around 200 000 people in the UK (NHS England, 2023). Secondary lymphoedema is a relatively common complication of cancer and cancer treatment, and in advanced disease it may present a challenging issue for community nursing staff caring for patients approaching the end of their lives. In this article, a case study considers the assessment and treatment of upper limb lymphoedema in a patient with advanced metastatic breast cancer. Management of this complex and distressing condition requires holistic assessment and collaborative care planning with the patient and their wider care team, including onward referral to specialist lymphoedema and palliative care services. The case study considers the typical presentation of lymphoedema in an upper limb, exclusion of reversible causes for oedema, awareness of palliative care emergencies such as superior vena cava obstruction, and the provision of supportive therapeutic interventions in context of the patient's expressed wishes for her ongoing care.

'Thank goodness you're here'. Exploring the impact on patients, family carers and staff of enhanced 7-day specialist palliative care services: A mixed methods study.

Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff.

Cancer Pain Management in Patients Receiving Inpatient Specialized Palliative Care Services

ContextCancer pain is a common complication that is frequently undertreated in patients with cancer. ObjectivesThis study is aimed at assessing the time needed to achieve cancer pain management goals through specialized palliative care (SPC). MethodsThis was a multicenter, prospective, longitudinal study of inpatients with cancer pain who received SPC. Patients were continuously followed up until they considered cancer pain management successful, and we estimated this duration using the Kaplan–Meier method. We investigated the effectiveness of pain management using multiple patient-reported outcomes (PROs) and quantitative measures, including pain intensity change in the Brief Pain Inventory. A paired-sample t-test was used to compare the pain intensity at the beginning and end of the observation period. ResultsCancer pain management based on the PROs was achieved in 87.9% (385/438) of all cases. In 94.5% (364/385) of these cases, cancer pain management was achieved within 1 week, and the median time to pain management was 3 days (95% confidence interval [CI], 2–3). The mean worst pain intensity in the last 24 h at the start and end of observation were 6.9 ± 2.2 and 4.0 ± 2.3, respectively, with a difference of −2.9 (95% CI, −3.2 to −2.6; p < 0.01). Overall, 81.6% of the patients reported satisfaction with cancer pain management, and 62 adverse events occurred. ConclusionSPC achieved cancer pain management over a short period with a high level of patient satisfaction resulting in significant pain reduction and few documented adverse events.

Quality outcomes for end-of-life care among people with haematological malignancies at a New Zealand cancer centre.

Little is known about the end-of-life (EOL) experience and specialist palliative care use patterns of patients with haematological malignancies (HMs) in New Zealand. This retrospective analysis sought to examine the quality of EOL care received by people with HMs under the care of Auckland District Health Board Cancer Centre's haematology service and compare it to international data where available. One hundred consecutive adult patients with HMs who died on or before 31 December 2019 were identified. We collected information on EOL care quality indicators, including anticancer treatment use and acute healthcare utilisation in the last 30 days of life, place of death and rate and timing of specialist palliative care input. During the final 14 and 30 days of life, 15% and 27% of the patients received anticancer therapy respectively. Within 30 days of death, 22% had multiple hospitalisations and 25% had an intensive care unit admission. Death occurred in an acute setting for 42% of the patients. Prior contact with hospital and/or community (hospice) specialist palliative care service was noted in 80% of the patients, and 67% had a history of hospice enrolment. Among them, 15% and 28% started their enrolment in their last 3 and 7 days of life respectively. The findings highlight the intensity of acute healthcare utilisation at the EOL and high rates of death in the acute setting in this population. The rate of specialist palliative care access was relatively high when compared with international experiences, with relatively fewer late referrals.

Palliative radiotherapy and the introduction of a Rapid Access Palliative Clinic in a national radiation oncology network

BackgroundPalliative radiotherapy (PRT) is commonly used to treat symptoms of advanced cancer. PRT has been associated with elevated 30-day mortality (30DM). A Rapid Access Palliative Clinic (RAPC) can streamline the treatment process for patients receiving treatment.AimsWe reviewed the PRT practices in a radiation oncology network in Ireland, and the implementation of a RAPC. Patient outcomes were assessed to inform future treatment decisions. MethodsA retrospective review of all patients who received PRT over 6 months in 2018 in St. Luke’s Radiation Oncology Network (SLRON) was undertaken. We assessed 30DM rates, demographics and referral to specialist palliative care (SPC) services. Subsequently, a retrospective analysis was conducted of a RAPC which ran for 6 months from 2019 to 2020. We assessed treatment data and mortality.ResultsOver 6 months, 645 patients commenced PRT in the SLRON. The 30DM for this cohort was 15.8% (n = 102), with most patients having lung primaries. Of the 30DM cohort, only 55% (n = 56) were referred to SPC services and only 26.4% (n = 27) had performance status recorded. Over 6 months, 40 patients attended 28 RAPCs. Of these, 88% (n = 35) received PRT. Single fraction therapy was utilised in 60% and 48% of patients underwent CT simulation and treatment on the same day. Ultimately, 75% of patients received SPC referral.ConclusionsReferral rates to SPC services and documentation of performance status were low in our 30DM retrospective review cohort. The RAPC facilitated quick treatment turnaround, fewer hospital visits and referral to SPC services.