Palliative Care Pathway Research Articles

Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children’s hospital

BackgroundTo ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges...

Developing and Evaluating a Care Pathway for Improving Palliative Care in Western Norway.

Background: To operationalize the palliative care approach and improve care across services, a palliative care pathway (PCP) was developed in Western Norway. The PCP is an evidence-based framework for palliative care assessment and interventions in the form of a web-based flowchart. Measures: An electronic questionnaire aimed at health care professionals (HCPs) examined perceived usability and content. We registered PCP webpage activity and conducted an evaluation seminar and group interviews. Intervention: The pathway was developed (2015) and piloted in two cities (2017-2018/2020). Outcomes: HCPs perceived that the PCP contributed to increased palliative care knowledge and skills and worked as a reference and educational tool. They found the PCP easily accessible but asked for a search option and easier webpage navigation. Conclusions/Lessons Learned: An available PCP can support a common language for palliative care in different settings and enhance patient-centered care. HCPs need time to familiarize themselves with its content and use.

Implementation of Patient-Reported Outcomes in a Medical Oncology Setting (the iPROMOS Study): Type II Hybrid Implementation Study.

Clinical trials have demonstrated that patient-reported outcome measures (PROMs) can improve mortality and morbidity outcomes when used in clinical practice. This study aimed to prospectively investigate the implementation of PROMs in routine oncology. Outcomes measured included improved symptom detection, clinical response to symptom information, and health service outcomes. Two of 12 eligible clinics were randomized to implement symptom PROMs in a medical oncology outpatient department in Australia. Randomization was carried out at the clinic level. Patients in control clinics continued with usual care; those in intervention clinics completed a symptom PROM at presentation. This was a pilot study investigating symptom detection, using binary logistic models, and clinical response to PROMs investigated using multiple regression models. A total of 461 patient encounters were included, consisting of 242 encounters in the control and 222 in the intervention condition. Patients in these clinics most commonly had head and neck, lung, prostate, breast, or colorectal cancer and were seen in the clinic for surveillance and oral or systemic treatments for curative, metastatic, or palliative cancer care pathways. Compared with control encounters, the proportion of symptoms detected increased in intervention encounters (odds ratio 1.05, 95% CI 0.99-1.11; P=.08). The odds of receiving supportive care, demonstrated by nonroutine allied health review, increased in the intervention compared with control encounters (odds ratio 3.54, 95% CI 1.26-9.90; P=.02). Implementation of PROMs in routine care did not significantly improve symptom detection but increased the likelihood of nonroutine allied health reviews for supportive care. Larger studies are needed to investigate health service outcomes. Australian New Zealand Clinical Trials Registry ACTRN12618000398202; https://tinyurl.com/3cxbemy4.

Palliative Care Experiences Among Adults From Underrepresented Racial and Ethnic Groups in the United States: A Scoping Review.

Patients from underrepresented racial and ethnic groups (URGs) in the United States (US) experience disparities in accessing palliative care (PC) at the end of life (EOL). Additionally, little effort has been made to understand their experiences with PC. To identify and synthesize existing literature on PC experiences among adults from URGs in nursing homes, community settings, and hospitals in the US. Guided by the Joanna Briggs Institute methodological recommendation and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we conducted a scoping review. We searched PubMed, EMBASE, CINAHL, Scopus, and ProQuest Dissertations & Theses Global from inception to January 2024. We included five studies representing Hispanic/Latino, American Indian, African/Black American, and Chinese individuals. Data were organized around two themes: navigating PC pathway and choices and practices during PC. Navigating PC pathway theme highlights that despite the several barriers URGs face when accessing PC, they seek PC services due to their limited formal family assistance in managing their chronic conditions and pain. The choices and practices during PC theme emphasize the roles URG family members play in EOL care, the patient's care preferences, and their spiritual practices and beliefs related to EOL care. This scoping review reveals limited literature about URG experiences with PC and highlights the need for more studies to focus on making PC services more accessible to URGs and providing culturally sensitive care to meet the needs of the diverse growing US population.

Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009–2021)

BackgroundPeople with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking.AimTo explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis.DesignWe conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation.Setting/participantsWe limited the analysis to the subsample of people aged over 64.ResultsThe prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home.ConclusionsThe records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients’ principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it.Trial registrationNo registration.

Burden of atrial fibrillation risk and outcomes amongst patients attending cardiology and elderly medicine services: prospective in-hospital implementation of the FIND-AF algorithm

Abstract Background Screening for silent AF is becoming increasingly important (1, 2), and the FIND-AF algorithms can use routinely-collected data to identify individuals at higher risk for undiagnosed AF (3). There may be a much higher prevalence of patients at risk for AF and its complications in a hospital environment compared with the community (4). Purpose We prospectively implemented the FIND-AF algorithm within cardiology and geriatric services to quantify the burden of AF risk amongst all-comers, and to understand their outcomes over the next 6 months. Methods We prospectively implemented the FIND-AF algorithm in the cardiology and geriatric departments of three UK hospitals for consecutive inpatient or outpatient attendances from February 1 to July 13th 2023. We assessed the number of individuals attending each service eligible for an AF screening protocol (exclusion criteria: age <30 years, history of AF, on a palliative care pathway, use of oral anticoagulation), and calculated the burden of AF risk in each service. Patients were followed up for 6 months for the primary outcome of incident AF, heart failure (HF), stroke/transient ischaemic attack (TIA)/systemic embolism, and death. Incident diagnoses were the first record of that condition in primary or secondary care records. Rate ratios (RRs) with 95% confidence intervals (CIs) for combined incident cardiovascular outcomes or death were derived through Poisson regression for predicted higher versus lower AF risk. Results Of 467 consecutive patients, 364 were eligible for AF screening. 66 were excluded due to a previous diagnosis of AF, 25 were already prescribed a long-term oral anticoagulant, 5 were on a palliative care pathway and 7 were aged <30 years. Baseline characteristics of each cohort are summarised in Table 1. Of patients eligible for AF screening, those attending geriatrics were at higher risk of incident AF than patients attending cardiology (median FIND-AF score: geriatrics, 0.015, 95% CI 0.008 - 0.024; cardiology, 0.005, 95% CI 0.001-0.015; p<0.05; distributions of risk summarised in Figure 1) and had a higher stroke risk. Absolute risk of AF was greater than 5% within the next 6 months for 11.6% and 9.1% of geriatric and cardiology patients, respectively. Of the eligible cohort, 328 had follow up at 6 months, with 46 experiencing the primary outcome (9, 7, 3, and 27 recorded cases of AF, HF, stroke/TIA, and death, respectively). The higher predicted risk cohort, compared to lower predicted risk, had a higher risk of combined incident AF, heart failure, or stroke/TIA/systemic embolism (Rate ratio: 5.59, 95% CI 1.13-101.01) and death (RR 9.68, 2.06-172.85). Conclusions The FIND-AF algorithm can be prospectively implemented in hospital records to identify cardiology and geriatric patients at risk of incident AF, heart failure, thromboembolic disease and death. There is an opportunity to conduct risk-guided screening in the context of hospital attendances.

Using the Tasmanian Palliative and End of Life Care Policy Framework (2022) to assess service delivery in a rural general practice.

This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice. Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end-of-life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home-based palliative care services. All Medical Benefit Scheme billings for after-hours or home-based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after-hours and home-visits delivered over a 12-month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non-palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home-visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role-definition, and inadequate remuneration. Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team-based approach. Access to and integration with specialist services remains a key component of community-based palliative care pathways.

Quality of cancer treatment care before and after a palliative care pathway: bereaved relatives’ perspectives

ObjectiveAppropriate communication between healthcare providers and patients and their families is an essential part of good (palliative) care. We investigated whether implementation of a standardised palliative care pathway (PCP) facilitated...

Concept-dependent and -independent care effects of site-specific care concepts using "pain" as an example

Structures of palliative care, cross-sectoral transitions and care pathways of patients with palliative care needs were investigated at two sites. The systematic comparison of similarities and differences using the topic of 'pain' as an example is intended to provide information on the extent to which these are related to site-specific palliative care concepts (integrated and cooperative). The study follows amixed-methods design. In addition to adocument analysis of anonymised patient records (n = 774), expert interviews (n = 20), as well as interviews with patients, relatives (n = 60) and focus groups (n = 12), were conducted. The systematic comparative analysis provides evidence for concept-independent commonalities (e.g. sociodemographic distribution, aggravated pain treatment) as well as concept-dependent differences (e.g. care pathways, facilitated continuous symptom control through integrated care structures) in the context of integrated or cooperative palliative care. Commonalities and differences with regard to the topic of pain, as focused on here, and its organisational management become tangible as effects of the respective organisational structure (=concept-dependent) as well as concept-independent external influencing factors.

More older adults died at their preferred place after implementation of a transmural care pathway for older adults at the end of life: a before-after study

BackgroundTo improve transmural palliative care for older adults acutely admitted to hospital, the PalliSupport intervention, comprising an educational programme and transmural palliative care pathway, was developed. This care pathway involves timely identification of palliative care needs, advance care planning, multidisciplinary team meetings, warm handover, and follow-up home visits. With this study, we evaluate changes in patient-related outcomes and transmural collaboration after implementation of the care pathway.MethodsWe conducted a before-after study, in which we compared 1) unplanned hospital admission and death at place of preference and 2) transmural collaboration before implementation, up to six months, and six to 18 months after implementation. Data from palliative care team consultations were collected between February 2017 and February 2020 in a teaching hospital in the Netherlands.ResultsThe palliative care team held 711 first-time consultations. The number of consultation, as well as the number of consultations for patients with non-malignant diseases, and consultations for advance care planning increased after implementation. The implementation of the pathway had no statistically significant effect on unplanned hospitalization but associated positively with death at place of preference more than six months after implementation (during/shortly after adjusted OR: 2.12; 95% CI: 0.84–5.35; p-value: 0.11, long term after adjusted OR: 3.14; 95% CI: 1.49–6.62; p-value: 0.003). Effects on transmural collaboration showed that there were more warm handovers during/shortly after implementation, but not on long term. Primary care professionals attended multidisciplinary team meetings more often during and shortly after implementation, but did not more than six months after implementation.ConclusionsThe pathway did not affect unplanned hospital admissions, but more patients died at their place of preference after implementation. Implementation of the pathway increased attention to- and awareness for in-hospital palliative care, but did not improve transmural collaboration on long-term. For some patients, the hospital admissions might helped in facilitating death at place of preference.

Implikationen zur Verbesserung der Versorgungsqualität und -sicherheit von palliativen Bewohner*innen in der stationären Pflege: eine qualitative Studie

IntroductionDespite the increasing importance of palliative care, the implementation of professional and ethical quality standards appears to be challenging for nursing homes, leading to different levels of palliative care between facilities. This study aims to examine the concrete problem areas of palliative care in everyday practice and to discover what is needed to improve health care quality and patient safety of palliative residents in nursing homes from different perspectives. MethodsSemi-structured interviews with 14 employees and managers of two nursing homes in urban and rural areas in North Rhine-Westphalia were conducted and analyzed according to Mayring’s qualitative content analysis. Additionally, characteristics of ideal-typical palliative care in nursing homes were identified from different perspectives through interdisciplinary focus groups of various involved professions. ResultsDue to a lack of structural and organizational guidelines, processes of palliative care are based on subjective actions of the staff, which leads to uncertainties and differences in the management of palliative care for nursing home residents. Besides limited time resources for care and support of residents at their end of life, this represents a major stress factor for employees. In the focus groups, characteristics of ideal-typical palliative care in the everyday practice of palliative care were identified. In terms of potential for optimization, palliative care pathways are seen as one way to contribute to creating a framework for palliative processes which at the same time leaves room for professional decisions in individual cases. DiscussionIt seems likely that inconsistencies in the management of palliative care processes can also be found in other nursing homes. Indications of this include the low proportion of residents with identified palliative care needs and the lack of use of assessments to identify palliative needs and to monitor typical palliative symptoms. At the same time, it must be taken into account that the last phase of life is characterised by individuality, which cannot and should not be standardised. In palliative care practice, professional perceptions and empirical knowledge are well needed. Nevertheless, in terms of quality of care, these should not be the sole basis for palliative action. ConclusionDifferent levels of palliative care and employees’ uncertainties indicate that palliative care practice in nursing homes requires a framework that helps staff to act more confidently and yet leaves room for professional action and decision-making in individual cases.

Specialist Palliative Care Consultation for Patients with Nonmalignant Pulmonary Diseases: A Retrospective Study.

Few patients with chronic nonmalignant pulmonary diseases receive specialist palliative care consultation, despite their high symptom burden in end of life. To study palliative care decision making, survival, and hospital resource usage in patients with nonmalignant pulmonary diseases with or without a specialist palliative care consultation. A retrospective chart review of all patients with a chronic nonmalignant pulmonary disease and a palliative care decision (palliative goal of therapy), who were treated in Tampere University Hospital, Finland, between January 1, 2018 and December 31, 2020. A total of 107 patients were included in the study, 62 (58%) had chronic obstructive pulmonary disease (COPD), and 43 (40%) interstitial lung disease (ILD). Median survival after palliative care decision was shorter in patients with ILD than in patients with COPD (59 vs. 213 days, p = 0.004). Involvement of a palliative care specialist in the decision making was not associated with the survival. Patients with COPD who received palliative care consultation visited less often emergency room (73% vs. 100%, p = 0.019) and spent fewer days in the hospital (7 vs. 18 days, p = 0.007) during the last year of life. When a palliative care specialist attended the decision making, the presence and opinions of the patients were recorded more often, and the patients were more frequently referred to a palliative care pathway. Specialist palliative care consultation seems to enable better end-of-life care and supports shared decision making for patients with nonmalignant pulmonary diseases. Therefore, palliative care consultations should be utilized in nonmalignant pulmonary diseases preferably before the last days of life.

Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis.

Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2) receiving care at the high-risk fetal center. Individualized care included opportunities for establishing goals, labor/delivery planning, grief support, and pediatric palliative care support. Results: A total of 107 patients were included during the two-year clinical pilot program. Of those who continued their pregnancy, 45% had care goals focused on comfort while 55% had goals focused on life prolongation. A significant proportion in both groups experienced a fetal or neonatal death. For babies who received comfort-focused care, one-third were transferred to hospice or home. Conclusions: A comprehensive perinatal palliative care pathway ensures that more families receive options of pre- and postnatal palliative care supports in varied circumstances where there is significant risk of fetal and neonatal mortality.

The effect of a palliative care pathway on medical interventions at the end of life: a pre-post-implementation study

PurposeAdequate integration of palliative care in oncological care can improve the quality of life in patients with advanced cancer. Whether such integration affects the use of diagnostic procedures and medical interventions has not been studied extensively. We investigated the effect of the implementation of a standardized palliative care pathway in a hospital on the use of diagnostic procedures, anticancer treatment, and other medical interventions in patients with incurable cancer at the end of their life.MethodsIn a pre- and post-intervention study, data were collected concerning adult patients with cancer who died between February 2014 and February 2015 (pre-PCP period) or between November 2015 and November 2016 (post-PCP period). We collected information on diagnostic procedures, anticancer treatments, and other medical interventions during the last 3 months of life.ResultsWe included 424 patients in the pre-PCP period and 426 in the post-PCP period. No differences in percentage of laboratory tests (85% vs 85%, p = 0.795) and radiological procedures (85% vs 82%, p = 0.246) were found between both groups. The percentage of patients who received anticancer treatment or other medical interventions was lower in the post-PCP period (40% vs 22%, p < 0.001; and 42% vs 29%, p < 0.001, respectively).ConclusionsImplementation of a PCP resulted in fewer medical interventions, including anticancer treatments, in the last 3 months of life. Implementation of the PCP may have created awareness among physicians of patients’ impending death, thereby supporting caregivers and patients to make appropriate decisions about medical treatment at the end of life.Trial registration numberNetherlands Trial Register; clinical trial number: NL 4400 (NTR4597); date registrated: 2014–04-27.

Challenges in the implementation and evaluation of a transmural palliative care pathway for acutely hospitalized older adults; lessons from the PalliSupport program: A qualitative process evaluation study

ObjectivesTo improve transmural palliative care for acutely admitted older patients, the PalliSupport transmural care pathway was developed. Implementation of this care pathway was challenging. The aim of this study was to improve understanding why the implementation partly failed. DesignA qualitative process evaluation study. Setting/participants:17 professionals who were involved in the PalliSupport program were interviewed. MethodsOnline semi-structured interviews. Thematic analysis to create themes according to the implementation framework of Grol & Wensing. ResultsFrom this study, themes within four levels of implementation emerged: 1) The innovation: challenges in current palliative care, the setting of the pathway and boost for improvement; 2) Individual professional: feeling (un)involved and motivation; 3) Organizational level: project management; 4) Political and economic level: project plan and evaluation. Conclusion and implicationsWe learned that the challenges involved in implementing a transmural care pathway in palliative care should not be underestimated. For successful implementation, we emphasize the importance of creating a program that fits the complexity of transmural palliative care. We suggest starting on a small scale and invest in project management. This could help to involve all stakeholders and anticipate current challenges in palliative care. To increase acceptance, create one care pathway that can start and be used in all care settings. Make sure that there is sufficient flexibility in time and room to adjust the project plan, so that a second pilot study can possibly be performed, and choose a scientific evaluation with both rigor and practical usefulness to evaluate effectiveness.

Physicians' perceptions of patient participation and the involvement of family caregivers in the palliative care pathway.

IntroductionPatient participation is essential for quality palliative care, and physicians play a crucial role in promoting participation. This study explores physicians' perceptions of patients and family caregivers' involvement in the different phases of the palliative pathway and employs a qualitative design with thematic analysis and a hermeneutic approach.MethodsA purposive sampling included physicians who worked in different phases of the palliative pathway. In‐depth, semi‐structured interviews were conducted with 13 physicians in Norway between May and June 2020.ResultsThree main themes illustrate physicians' perceptions of patients' and family caregivers' involvement: (1) beneficence for the patient and the family caregivers in the early phase, (2) autonomy and shared decision‐making in the middle phase, and (3) family involvement in the terminal phase.ConclusionThe physicians perceived bereavement conversations as essential, particularly if the pathway had been challenging. They also perceived patient participation and family caregivers' involvement as contextual. The results reveal that participation differs across the different phases of the palliative pathway. This type of knowledge should be included in the education of health‐care professionals. Future research should explore elements vital to successful patient participation and family involvement in the different phases of care.Patient or Public ContributionsFamily caregivers were involved in a previous study through individual interviews. The same interview guide used for the family caregivers was used when interviewing the physicians. The family caregivers' contribution led to nuanced questions in the interviews with the physicians, questions leaning on their stories told.

Antibiotic Therapy in Integrated Oncology and Palliative Cancer Care: An Observational Study.

Simple SummaryApproximately one-quarter of the patients with advanced cancer acutely admitted to the Palliative Care Unit at St. Olav’s University Hospital received intravenous antibiotics. We observed that physiological variables and paraclinical findings in patients with and without infections differed at admission but observed no differences in patient-reported outcome measures. Patients admitted for infection had no shorter life expectancy than patients without infections. We did not observe any difference in the prescription of antibiotics to patients with ongoing anti-cancer therapy (integrated pathway) compared to patients with no ongoing cancer therapy (palliative care pathway). This information increases the knowledge about the use of antibiotic therapy in palliative cancer care.Decision-making for antibiotic therapy in palliative cancer care implies avoiding futile interventions and to identify patients who benefit from treatment. We evaluated patient-reported outcome-measures (PROMs), physiological findings, and survival in palliative cancer care patients hospitalized with an infection. All acute admissions during one year, directly to a University Hospital unit that provided integrated services, were included. Serious infection was defined as a need to start intravenous antibiotics. PROMs, clinical and paraclinical variables, and survival were obtained. Sixty-two of 257 patients received intravenous antibiotic treatment. PROMs were generally similar in the infection group and the non-infection group, both in respect to intensities at admission and improvements during the stay. There were more physiological and paraclinical deviations at admission in patients in the infection group. These deviations improved during the stay. Survival was not poorer in the infection group compared to the non-infection group. Patients in integrated cancer care were as likely to be put on intravenous antibiotics but had longer survival. In integrated oncology and palliative cancer services, patients with an infection had similar outcomes as those without an infection. This argues that the use of intravenous antibiotics is appropriate in many patients admitted to palliative care.

Palliative Care in Older People with Multimorbidities: A Scoping Review on the Palliative Care Needs of Patients, Carers, and Health Professionals.

Although numerous studies have been conducted previously on the needs of cancer patients at the end of their life, there is a lack of studies focused on older patients with non-oncological complex chronic multipathologies. Examining these needs would help to gain a greater understanding of the profile of this specific population within the palliative care (PC) pathway and how the health and care systems can address them. The aim of this review was to identify the needs influencing PC among older patients with multimorbidities, their relatives or informal caregivers, and the health professionals who provide care for these patients. A scoping literature review guided by the Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist was carried out with literature searched in the Medline, Embase, CINAHL, WoS, Cochrane Library, PsycINFO, and Scopus databases from 2009 to 2022. Eighty-one studies were included, demonstrating a great variety of unaddressed needs for PC among chronic older patients and the complexity in detecting those needs and how to refer them to PC pathways. This review also suggested a scarcity of tools and limited pathways for professionals to satisfy their needs for these patients and their families, who often felt ignored by the system. Substantial changes will be needed in health and care systems at the institutional level, providing more specialized PC environments and systematizing PC processes.

Patient & Caregiver Experiences: Qualitative Study Comparison Before and After Implementation of Early Palliative Care for Advanced Colorectal Cancer.

The Palliative Care Early and Systematic (PaCES) program implemented an early palliative care pathway for advanced colorectal cancer patients in January 2019, to increase specialist palliative care consultation and palliative homecare referrals more than three months before death. This study aimed to understand the experience of patients with advanced colorectal cancer and family caregivers who received early palliative care supports from a specialist palliative care nurse and compared those experiences with participants who experienced standard oncology care prior to implementation of early palliative care. This was a qualitative and patient-oriented study. We conducted semi-structured telephone interviews with two cohorts of patients with advanced colorectal cancer before and after implementation of an early palliative care pathway. We conducted a thematic analysis of the transcripts guided by a Person-Centred Care Framework. Seven patients living with advanced colorectal cancer and five family caregivers who received early palliative care supports expressed that visits from their early palliative care nurse was helpful, improved their understanding of palliative care, and improved their care. Four main themes shaped their experience of early palliative care: care coordination, perception of palliative care & advance care planning, coping with advanced cancer, and patient and family engagement. These findings were compared with experiences of 15 patients and seven caregivers prior to pathway implementation. An early palliative care pathway can improve advanced cancer care, and improve understanding and acceptance of early palliative care. This work was conducted in the context of colorectal cancer but may have relevance for the care of other advanced cancers.

Assessing the Costs of Home Palliative Care in Italy: Results for a Demetra Multicentre Study.

Background: The sustainability of palliative care services is nowadays crucial inasmuch as resources for palliative care are internationally scarce, the funding environment is competitive, and the potential population is growing. Methods: The DEMETRA study is a multicentre prospective observational study, describing the intensity of care and the related costs of palliative home care pathways. Results: 475 patients were enrolled as recipients of specialized palliative home care. The majority of recipients were cancer patients (89.4%). The mean duration of palliative care pathways was 46.6 days and mean home care intensity coefficient equal to 0.6. The average daily cost of the model with the reference variables is 96.26 euros. Factors statistically significantly associated with an increase in mean daily costs were greater dependence and extreme frailty (p < 0.05). Otherwise, a longer duration of treatment course was associated with a significant decrease in mean daily costs (p < 0.001). Conclusions: In terms of clinical and organizational management, considering the close association with the intensity and cost of the path, frailty should be systematically assessed by all facilities that potentially refer patients to home palliative care teams, and it should be carefully recorded in a standardized payment rate perspective.