Community Specialist Palliative Care Research Articles

Cross-sectional study to evaluate patients’ medication management with a new model of care: incorporating a pharmacist into a community specialist palliative care telehealth service

BackgroundPatients receiving palliative care are often on complex medication regimes to manage their symptoms and comorbidities and at high risk of medication-related problems. The aim of this cross-sectional study was to evaluate the involvement of a pharmacist to an existing community specialist palliative care telehealth service on patients’ medication management.MethodThe specialist palliative care pharmacist attended two palliative care telehealth sessions per week over a six-month period (October 2020 to March 2021). Attendance was allocated based on funding received. Data collected from the medication management reviews included prevalence of polypharmacy, number of inappropriate medication according to the Screening Tool of Older Persons Prescriptions in Frail adults with limited life expectancy criteria (STOPP/FRAIL) and recommendations on deprescribing, symptom control and medication management.ResultsIn total 95 patients participated in the pharmaceutical telehealth service with a mean age of 75.2 years (SD 10.67). Whilst 81 (85.3%) patients had a cancer diagnosis, 14 (14.7%) had a non-cancer diagnosis. At referral, 84 (88.4%, SD 4.57) patients were taking ≥ 5 medications with 51 (53.7%, SD 5.03) taking ≥ 10 medications. According to STOPP/FRAIL criteria, 142 potentially inappropriate medications were taken by 54 (56.8%) patients, with a mean of 2.6 (SD 1.16) inappropriate medications per person. Overall, 142 recommendations were accepted from the pharmaceutical medication management review including 49 (34.5%) related to deprescribing, 20 (14.0%) to medication-related problems, 35 (24.7%) to symptom management and 38 (26.8%) to medication administration.ConclusionThis study provided evidence regarding the value of including a pharmacist in palliative care telehealth services. Input from the pharmacist resulted in improved symptom management of community palliative care patients and their overall medication management.

Reflection on the impact of the COVID-19 pandemic on a community specialist palliative care nurse team.

A global COVID-19 pandemic was declared by the World Health Organization in March 2020. To explore COVID-19's impact on one specialist community palliative care nurse (SCPCN) team 8 months after the first COVID-19 wave in the UK. The Gibbs Reflective Cycle was used. This SCPCN team described the COVID-19 pandemic as the most difficult and challenging time experienced at work, due to the increased workload and having to provide unsustainable levels of support for patients and their families. Despite the COVID-19 pandemic's significant demands on community palliative care, the SCPCN team was able to adapt accordingly. This resulted in an increasingly collaborative, reflexive, responsive, skilled and resilient team, proud of the personalised support offered to patients, their families and to other services.

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.

Evaluating the effectiveness of a clinical nurse specialist triage role in a specialist palliative care community service.

In 2017, a clinical nurse specialist (CNS) triaging role was created within a specialist palliative care community service (SPCCS) in Ireland to enhance the triage process. The aim of this study is to evaluate the effectiveness of the role regarding data collection and reporting. Structured feedback from healthcare professionals (HCPs) was obtained on the effects, challenges and sustainability of this role. This study used a mixed-methods approach. A quantitative analysis of referrals triaged by the SPCCS CNS over 2 years (2018-2019) was performed. Two focus groups with HCP's within the same service were completed in January 2020 and one-to-one interviews were conducted. The quantitative and qualitative results were merged using a triangulation protocol. In 2017, new health service executive (HSE) standards to categorise the urgency of patient assessment were introduced. Quantitatively, an improvement within the triage process was seen, with an increase in compliance with national access standards. In 2018, compliance was 89.1%. In 2019, this was 96.8%, an improvement of 7.7%. A data discrepancy of 9.5% of referrals was noted over the first 9 months of 2018. After this, data documentation and congruency were seen to improve for the final 3 months of 2018 to 100% and remained at 100%. Qualitative data highlighted the benefits and challenges of the Triage CNS role. Mixed-methods correlation revealed corroboration between both using a triangulation protocol. The triage CNS role was pivotal as an initial point of referral contact. Increased compliance with national access standards occurred resulting in improvements in case and case-load management, information gathering, documentation, data collection and analysis.

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 care needs and specialist services post stroke: national population-based study

Objectives(1) To compare palliative care needs of patients admitted primarily with stroke and (2) to determine how the care needs of these patients affect their use of different types of...

Systematic Review of Models of Effective Community Specialist Palliative Care Services for Evidence of Improved Patient-Related Outcomes, Equity, Integration, and Health Service Utilization.

Background: The benefits of palliative care programs are well documented. However, the effectiveness of specialist palliative care services is not well established. The previous lack of consensus on criteria for defining and characterizing models of care has restrained direct comparison between these models and limited the evidence base to inform policy makers. A rapid review for studies published up to 2012 was unable to find an effective model. Aim: To identify effective models of community specialist palliative care services. Design: A mixed-method synthesis design reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. Prospero: CRD42020151840. Data sources: Medline, PubMed, EMBASE, CINAHL and the Cochrane Database of Systematic Reviews were searched in September 2019 for primary research and review articles from 2012 to 2019. Supplementary search was conducted on Google in 2020 for policy documents to identify additional relevant studies. Results: The search yielded 2255 articles; 36 articles satisfied the eligibility criteria and 6 additional articles were identified from other sources. Eight systematic reviews and 34 primary studies were identified: observational studies (n = 24), randomized controlled trials (n = 5), and qualitative studies (n = 5). Community specialist palliative care was found to improve symptom burden/quality of life and to reduce secondary service utilization across cancer and noncancer diagnoses. Much of this evidence relates to face-to-face care in home-based settings with both round-the-clock and episodic care. There were few studies addressing pediatric populations or minority groups. Findings from qualitative studies revealed that care coordination, provision of practical help, after-hours support, and medical crisis management were some of the factors contributing to patients' and caregivers' positive experience. Conclusion: Strong evidence exists for community specialist palliative care to improve quality of life and reducing secondary service utilization. Future research should focus on equity outcomes and the interface between generalist and specialist care.

‘The palliative care ambulance’: A qualitative study of patient and caregiver perspectives of an ambulance service

Background: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. Aim: To explore patient and family caregiver experiences of paramedics’ contribution to palliative care at home. Design: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. Setting/participants: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. Results: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. Conclusion: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.

Community specialist palliative care services in New Zealand: a survey of Aotearoa hospices.

Community specialist palliative care (SPC) in Aotearoa New Zealand is provided by independent hospices. Substantial increase in demand for palliative care is projected in the next 20 years. We aimed to describe the current landscape of SPC services across Aotearoa whilst incorporating an equity lens. A descriptive cross-sectional survey was undertaken to describe aspects of hospice service and populations served. Survey links were emailed to clinical, or service leads of hospices identified via Hospice New Zealand Website. All eligible hospices (n=32) completed the online survey. All hospices provided care at home, with 94% (n=30) also providing care for patients in aged residential care facilities. All 32 hospices provided symptom management, family and carer support and bereavement care. Six hospices (19%) did not provide afterhours cover. Fifteen (47%) hospices did not have Māori cultural position and median full time equivalent across all hospices for such position was one day per week. Only nine (28%) hospices provided palliative medicine specialist training. Areas of inconsistency were highlighted including afterhours access and cultural support for Māori. The capacity of the present system to address current and future shortages of palliative medicine specialist is questioned.

How Safe Do Dying People Feel at Home? Patients' Perception of Safety While Receiving Specialist Community Palliative Care.

There is a research gap regarding safety concerns of patients at the end of life. The aim of this study was, therefore, to explore whether patients under specialist community palliative care feel safe at home and which factors affect the perceived safety. Furthermore, we investigated if perception of safety is associated with different aspects of subsequent care. Using a standardized questionnaire, a cross-sectional survey was conducted among 100 specialist community palliative care patients. Logistic regression was used to examine the strength of the association between clinical and socio-demographic variables and the perception of safety. After a 6-month follow-up period, we analyzed differences in various care-related outcomes between patients with unaffected and impaired perceptions of safety. In our study, one in five patients receiving specialist community palliative care expressed safety concerns. Subdomains of safety that were reported most frequently were physical disability (60%), physical symptoms (30%), psychological symptoms (26%), and side effects/complications of drug therapy (19%). Of the participants surveyed after the initial COVID-19 lockdown, 35.1% reported that they felt their safety had been adversely affected by the pandemic. Compromised safety perception was associated with higher levels of palliative care-related problems, and proximity to death. Our study uncovered relevant safety concerns of palliative care patients receiving specialist community palliative care. The insights gained into patient-reported problems may help healthcare professionals to identify situations where patients feel unsafe. Further research should address primary and secondary prevention measures to improve the quality of end-of-life care in the home environment.

Quality of end-of-life care with non-malignant liver disease: Analysis of the VOICES National Survey of Bereaved People.

Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease. A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015. More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p< .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p< .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p< .001). For this group, poorer care was associated with younger (65-74 vs. 18-64 years, OR [odds ratio] 1.39, p= .01), more socially deprived decedents (OR .78, p= .02), and better care with greater social support (OR 1.82, p< .001) and community specialist palliative care involvement (OR 1.80, p< .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p= .92) or place of death (hospital vs. non-hospital, p= .476). End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.

The impact of specialist community palliative care teams on acute hospital admission rates in adult patients requiring end of life care: A systematic review.

The aim of this systematic review was to determine the impact that specialist community palliative care teams (SCPCT) have on acute hospital admission rates in adult palliative care (PC) patients who require End of Life Care (EOLC). Using systematic review methodology, eight studies were obtained from thorough searching of CINAHL, Medline and Embase databases. The review question was formulated using the PICO mnemonic - Population, Intervention, Comparison and Outcome. PRISMA guidelines were used to conduct the review and record the database searches. Data were extracted using a pre-designed extraction tool and all included studies were quality appraised using the checklist. The results are presented as a narrative review. For the purposes of this review SCPCT is a minimum of one specialist doctor and one specialist nurse. The eight selected studies reported that when SCPCT's cared for patients requiring EOLC there was a reduction in the admission rates to acute hospital settings in comparison to those who received standard care only. Some studies showed this reduction to be as high as 33% and 34% in the last year of life. With regards to secondary outcomes the studies that evaluated the impact of SCPCT's on emergency department usage and hospital death rates all found that SCPCT's had a positive influence in both areas. With regards to emergency department usage, one study reported the most significant reduction of 51% for patients who had SCPCT compared with those who had not. With regards to hospital death rates, the most significant results found that 39% of patients receiving SCPCT died in hospital compared to 74.8% who did not receive SCPCT. This review demonstrates that SCPCT's have a positive impact in reducing acute hospital admissions in adult patients requiring EOLC, however, these results may not be conclusive. Palliative care is a complex intervention with a very diverse population. It is vital therefore that further research and investigation, accounting for the confounding factors that may affect the accuracy of the results, is undertaken.

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.

129 MAKING THE CASE FOR ENHANCED INTEGRATION BETWEEN MEMORY ASSESSMENT AND SUPPORT AND COMMUNITY PALLIATIVE CARE SERVICES IN ADVANCED DEMENTIA

Abstract Background In Ireland there are an estimated 64,000 people living with dementia. There is a growing body of evidence that a palliative approach, including access to specialist palliative care in the later stages of dementia is essential for wellbeing and the promotion of holistic, person-centred care. Yet many people living with advanced dementia have limited access to specialist palliative care services and such services often feel ill equipped to meet the unique, complex needs of this cohort. Methods This is a case study report of the joint working interface between Memory Assessment and Support (MASS) and Specialist Community Palliative Care (SPPCT). M was a 85 year old lady, with advanced dementia and history of lung cancer. CT Brain showed a large left parietal lobe tumour, probable metastatic lesion. Family agreed that further investigations were inappropriate and care objective was to manage her needs in her home in accordance with her previously known wishes. Results A joint initial visit with SCPCT and MASS was carried out which included medication review, symptom management and assessment of additional service need. Regular visits from SCPCT with support from primary care services and MASS ensured that appropriate services were in situ, symptoms were regularly assessed and treatment plan adjusted as needed. M was supported to die at home in the care of her family, as per her wishes. Conclusion This case illustrates the value of the partnership between MASS and SCPCT. Services that are responsive to client needs can ensure that appropriate care is given in the right place at the right time in accordance with their will and preference. This is in line with Slainte Care principles and provides an alternative pathway for end of live care for people with advanced dementia away from acute care settings.

Preferred Place of Death-A Study of 2 Specialist Community Palliative Care Services in Australia.

Choice and preference are fundamental to person-centered care and supporting personal choice at the end of life should be a priority. This study analyzed the relationship between a person's preferred place of death and other individual variables that might influence their actual place of death by examining the activity of 2 specialist community palliative care services in Australia. This was a cross-sectional study of 2353 people who died between 01 August 2016-31 August 2018; 81% died in their preferred place. Sex, type of life-limiting illness, and length of time in care were the only variables significantly related to dying in one's preferred place. Women were more likely to die in their preferred place than men (84% v 78%) and people with a non-cancer diagnosis were 7% more likely to die in their preferred place than those with cancer, particularly when that place was their private residence (74% v 60%) or Residential Aged Care Facility (98% v 89%). Someone in care for 0-7 days had 4.2 times greater odds of dying in their preferred place (OR = 4.18, 2.20-7.94), and after 21 days in care, people had 4.6 greater odds of having a preference to die in a hospital (OR = 4.63, 3.58-5.99). Both community palliative care services have capacity and a model of care that is responsive to choice. These findings align with known referral patterns and disease trajectories and demonstrate that it is possible to support the majority of people in the care of community palliative care services to die in their preferred place.

Shared electronic care coordination systems following referral to hospice.

In Scotland, the Key Information Summary (KIS) enables health providers to access key patient information to guide decision-making out-of-hours. KISs are generated in primary care and rely on information from other teams, such as community specialist palliative care teams (CSPCTs), to keep them up-to-date. This study involved a service evaluation consisting of case note reviews of new referrals to a CSPCT and semi-structured interviews with palliative care community nurse specialists (CNSs) regarding their perspectives on KISs. Some 44 case notes were examined, and 77% of patients had a KIS on CSPCT referral. One-month post-referral, all those re-examined (n=17) had a KIS, and 59% KISs had been updated following CNS assessments. CNSs cited anticipatory care planning (ACP) as the most useful aspect of KIS, and the majority of CNSs said they would appreciate KIS editing access. A system allowing CNSs to update KISs would be acceptable to CNSs, as it could facilitate care co-ordination and potentially improve comprehensiveness of ACP information held in KISs.

Validation of the responding to urgency of need in palliative care (RUN-PC) triage tool

Background: The Responding to Urgency of Need in Palliative Care (RUN-PC) Triage Tool is a novel, evidence-based tool by which specialist palliative care services can manage waiting lists and workflow by prioritising access to care for those patients with the most pressing needs in an equitable, efficient and transparent manner. Aim: This study aimed to establish the intra- and inter-rater reliability, and convergent validity of the RUN-PC Triage Tool and generate recommended response times. Design: An online survey of palliative care intake officers applying the RUN-PC Triage Tool to a series of 49 real clinical vignettes was assessed against a reference standard: a postal survey of expert palliative care clinicians ranking the same vignettes in order of urgency. Setting/Participants: Intake officers (n = 28) with a minimum of 2 years palliative care experience and expert clinicians (n = 32) with a minimum of 10 years palliative care experience were recruited from inpatient, hospital consultation and community palliative care services across metropolitan and regional Victoria, Australia. Results: The RUN-PC Triage Tool has good intra- and inter-rater reliability in inpatient, hospital consultation and community palliative care settings (Intraclass Correlation Coefficients ranged from 0.61 to 0.74), and moderate to good correlation to expert opinion used as a reference standard (Kendall’s Tau rank correlation coefficients ranged from 0.68 to 0.83). Conclusion: The RUN-PC Triage Tool appears to be a reliable and valid tool for the prioritisation of patients referred to specialist inpatient, hospital consultation and community palliative care services.

Factors Associated with Re-Enrollment of Patients from a Specialist Community Palliative Care Service.

Objective: The aim of this study was to describe the patterns of discharge and re-enrollment to a community palliative care service, and to identify factors associated with re-enrollment. Background: Community-based palliative care is a limited resource. The evidence base to guide discharge practices from community palliative care services is limited. Methods: A retrospective audit of the electronic medical records for all patients discharged from the Sacred Heart Community Palliative Care Service (SHCPCS), Sydney, from July 2010 to July 2016 was conducted. Patients were excluded if they were discharged due to death, transferred out of catchment area, declined the service, transferred to another hospital, or were referred inappropriately. Data extracted included sociodemographic variables, living situation, diagnoses, and discharge and re-enrollment details. Using binary logistic regression analysis, predictive factors, including socio-demographic characteristics, diagnosis and length of episode of care, were evaluated. Results: Of the 739 patients who met the inclusion criteria, 42 (5.7%) were re-enrolled to the service. The median length of the initial episode of care was 65 days and the median timeframe between discharge and re-enrollment was 216 days. Patients living in residential care facilities (odds ratio [OR] 3.45; 95% confidence interval [CI] 1.28-9.28; p = 0.01) and those with malignant diagnoses (OR 2.22; 95% CI 1.00-4.93; p = 0.04) had higher rates of re-enrollment. Discussion: The proportion of patients re-enrolled to the service was low. Both patient factors and disease factors were associated with re-enrollment. Future prospective studies evaluating prognostic factors to assist with effective discharge processes and guidelines are warranted.

Barriers and facilitators to implementing the Carer Support Needs Assessment Tool in a community palliative care setting.

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an 'add-on' to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.

The pattern and timing of changes in preferred place of death for patients admitted to a community specialist palliative care service

For patients receiving palliative care, expressing a preferred place of death (PPD) reduces anxiety and depression and increases the likelihood of achieving their preference. However, during the course of a life-limiting illness, patients commonly change their PPD at least once prior to death. The aim of this study was to identify the pattern and timing of how patients (and families) receiving specialist palliative care change their PPD over time. A retrospective chart audit was conducted of patients who died over a 7-month period whilst in the care of a metropolitan-based Community Specialist Palliative Care Service where PPD is routinely recorded every time a discussion on the topic occurs. These discussions are triggered by various factors which highlight the need to re-assess or confirm PPD. Results showed that 80% of patients achieved their PPD. There was no change to PPD in 64% of patients after the initial assessment, while 36% changed preferences once (27%), twice (8%) or three times (1%). Symptom management (10%) and family requests (30%) were cited as reasons for changing PPD. This study highlights that providers should revisit end-of-life discussions with patients along the disease trajectory and facilitate the consideration of all possible places for a good and safe death and the different scenarios that may influence patient decisions.