De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
Background: The five Nordic countries with a population of 27M people form a rather homogenous region in terms of health care. The management of Head and Neck Cancer (HNC) is centralized to the 21 university hospitals in these countries. Our aim was to survey the current status of organization of palliative care for patients with HNC in the Nordic countries as the field is rapidly developing.
Materials and methods: A structured web-based questionnaire was sent to all the Departments of Otorhinolaryngology—Head and Neck Surgery and Oncology managing HNC in the Nordic countries.
Results: All 21 (100%) Nordic university hospitals responded to the survey. A majority (over 90%) of the patients are discussed at diagnosis in a multidisciplinary tumor board (MDT), but the presence of a palliative care specialist is lacking in 95% of these MDT’s. The patients have access to specialized palliative care units (n = 14, 67%), teams (n = 10, 48%), and consultants (n = 4, 19%) in the majority of the hospitals.
Conclusion: The present results show that specialized palliative care services are available at the Nordic university hospitals. A major finding was that the collaboration between head and neck surgeons, oncologists and palliative care specialists is not well structured and the palliative care pathway of patients with HNC is not systematically organized. We suggest that early integrated palliative care needs to be included as an addition to the already existing HNC care pathways in the Nordic countries.
Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland.
Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM).
Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis.
Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.
BACKGROUND: As health-care institutions mobilize resources to address the coronavirus disease 2019 (COVID-19) pandemic, palliative care may potentially be underutilized. It is important to assess the use of palliative care in response to the COVID-19 pandemic.
METHODS: This is a retrospective single-center study of patients with COVID-19 diagnosed via reverse transcriptase-polymerase chain reaction assay admitted between March 1, 2020, and April 24, 2020. An analysis of the utilization of palliative care in accordance with patient comorbidities and other characteristics was performed while considering clinical outcomes. Chi-square test was used to determine associations between categorical variables while t-tests were used to compare continuous variables.
RESULTS: The overall mortality rate was 21.5% (n = 52), and in 48% (n = 25) of these patients, palliative care was not involved. Fifty-nine percent (n = 24) of those who had palliative consults eventually elected for comfort measures and transitioned to hospice care. Among those classified as having severe COVID-19, only 40% (n = 31) had palliative care involvement. Of these patients with severe COVID-19, 68% (n = 52) died. Patients who got palliative care consults were of older age, had higher rates of intubation, a need for vasopressors, and were dead.
CONCLUSION: There was a low utilization rate of palliative care in patients with COVID-19. Conscious utilization of palliative care is needed at the time of COVID-19.
Background: Latinos are the largest minority group in the United States and when compared with non-Latino whites suffer from higher rates of certain chronic diseases. Latino community health workers (promotores de salud) are successful in improving the health of their communities. However, evidence of their effectiveness in increasing awareness of palliative care (PC) is limited.
Objective: To evaluate the feasibility of applying a promotores de salud model to improve PC awareness among Latinos within the context of chronic disease management.
Methods: Bilingual promotores from Familias en Acción trained 76 southern California promotores on PC and chronic disease management. Promotores agreed to disseminate the information learned to 10+ Latino community members. The strengths of the curriculum and the community's needs were identified during phone interviews six months post-training.
Results: In 406 diverse settings, 69 promotores trained 2734 community members. Interviews with promotores at follow-up established four themes: (1) holistic health in chronic disease management; (2) communication with doctors; (3) shared decision making, patients' rights, and control; and (4) need for PC information (awareness, access, and support groups).
Conclusion: Promotores proved effective at disseminating information related to PC within chronic disease management to Latino community members. Future training should include information on support groups and where caregivers can seek help while caring for those with a terminal disease.
BACKGROUND: Pulmonary arterial hypertension (PAH) is a progressive disease associated with significant morbidity and mortality. Despite the negative impact of PAH on quality of life and survival, data on utilization of specialty palliative care services (PCS) is scarce.
RESEARCH QUESTION: We sought to evaluate the inpatient utilization of PCS in patients with PAH.
METHODS: Using the National Inpatient Sample, 30,495 admissions with a primary diagnosis of PAH were identified during 2001 to 2017. The primary outcome of interest was temporal trends and predictors of inpatient PCS utilization in patients with PAH.
RESULTS: The inpatient utilization of PCS was low (2.2%) but increased during the study period from 0.5% in 2001 to 7.6% in 2017, with a significant increase starting in 2009. White race, private insurance, higher socioeconomic status, hospital-specific factors, higher comorbidity burden (Charlson Comorbidity Index), cardiac and non-cardiac organ failure, use of extracorporeal membrane oxygenation and non-invasive mechanical ventilation were independent predictors of increased PCS utilization. PCS use was associated with a higher prevalence of do-not-resuscitate status, a longer length of stay, higher hospitalization costs and increased in-hospital mortality with less frequent discharges to home, likely because these patients were also sicker (higher comorbidity index and illness acuity).
CONCLUSIONS: The inpatient utilization of PCS in patients with PAH is low but increasing over recent years. Despite increased PCS utilization over time, there continues to be patient and hospital-specific disparities in PCS utilization. Further studies evaluating these disparities and the role of PCS in the comprehensive care of PAH patients are warranted.
Background: Metastatic foregut cancers (MFC) are associated with debilitating symptoms that negatively impact patients’ quality of life. Palliative care (PC) is effective in mitigating disease-, psychosocial-, and treatment-related effects and may improve survival in select cases. Our study characterizes PC utilization rates in MFC and identifies factors associated with PC receipt.
Methods: We conducted a retrospective review of 228,027 National Cancer Database patients diagnosed with MFC between 2004 and 2016. Chi-squared tests were used to analyze differences between groups receiving and not receiving PC. Logistic regression was performed to assess the impact of factors on the likelihood of receiving PC.
Results: Overall PC utilization was low (17.8%). A greater proportion of patients not receiving PC were in the lowest median income quartile of < $38,000/year versus those receiving PC (18.1% vs 17.8%, p < 0.0001). Higher education was associated with increased likelihood of receiving PC (OR 1.23 for communities with < 6.3% no high school degree vs = 17.6%, p < 0.0001). Hispanics were significantly less likely to receive PC compared to Whites (OR 0.72, 95% CI 0.68–0.76). Patients treated at academic centers were also more likely to receive PC compared to those treated in the community (OR 1.10, 95% CI 1.05–1.14).
Conclusions: PC is a key component in improving quality of life among MFC patients. Despite slight increases in PC rates over time, PC remains drastically underutilized. Significant racial and socioeconomic disparities in patterns of PC delivery exist. Further studies are needed to understand these disparities in order to identify key targets for interventions aimed at improving equity.
BACKGROUND: Despite the advances in End-of-life (EOL) cancer care, disparities remain in the accessibility and utilisation of EOL cancer care resources. Often explained by socio-demographic factors, geographic variation exists in the availability and provision of EOL cancer care services among EOL cancer decedents across urban versus rural settings. This systematic review aims to synthesise mortality follow-back studies on the patterns of EOL cancer care resource use for adults (>18 years) during end-of-life cancer care.
METHODS: Five databases were searched and data analysed using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Inclusion criteria involved; a) original research; b) quantitative studies; c) English language; d) palliative care related service use in adults (>18 years) with any malignancy excluding non-melanoma skin cancers; e) exclusive end of life focus; f) urban-rural focus. Narrative reviews and discussions were excluded.
RESULTS: 24 studies met the inclusion criteria. End-of-life cancer care service utilisation patterns varied by rurality and treatment intent. Rurality was strongly associated with higher rates of Emergency Department (ED) visits and hospitalisations and lower rates of hospice care. The largest inequities between urban and rural health service utilisation patterns were explained by individual level factors including age, gender, proximity to service and survival time from cancer diagnosis.
CONCLUSIONS: Rurality is an important predictor for poorer outcomes in end-of-life cancer care. Findings suggest that addressing the disparities in the urban-rural continuum is critical for efficient and equitable palliative cancer care. Further research is needed to understand barriers to service access and usage to achieve optimal EOL care for all cancer patient populations.
Background: Service provision is a key domain to assess national-level palliative care development. Three editions of the European Association for Palliative Care (EAPC) Atlas of Palliative Care monitored the changes in service provision across Europe since 2005.
Aim: To study European trends of specialized service provision at home care teams, hospital support teams, and inpatient palliative care services between 2005 and 2019.
Design: Secondary analysis was conducted drawing from databases on the number of specialized services in 2005, 2012, and 2019. Ratios of services per 100,000 inhabitants and increase rates on number of services for three periods were calculated. Analysis of variance (ANOVA) analyses were conducted to determine significant changes and chi-square to identify countries accounting for the variance. Income-level and sub-regional ANOVA analysis were undertaken.
Setting: 51 countries.
Results: Forty-two countries (82%) increased the number of specialized services between 2005 and 2019 with changes for home care teams (104% increase-rate), inpatient services (82%), and hospital support teams (48%). High-income countries showed significant increase in all types of services (p < 0.001), while low-to-middle-income countries showed significant increase only for inpatient services. Central–Eastern European countries showed significant improvement in home care teams and inpatient services, while Western countries showed significant improvement in hospital support and home care teams. Home care was the most prominent service in Western Europe.
Conclusion: Specialized service provision increased throughout Europe, yet ratios per 100,000 inhabitants fell below the EAPC recommendations. Western Europe ratios’ achieved half of the suggested services, while Central–Eastern countries achieved only a fourth. High-income countries and Western European countries account for the major increase. Central–Eastern Europe and low-to-middle-income countries reported little increase on specialized service provision.
Background: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. To enhance primary EoLC, the facilitators and barriers to their provision need to be understood.
Objective: To provide a comprehensive description of the facilitators and barriers to GP and GPN provision of PC or EoLC.
Method: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, PsycInfo, Embase, Joanna Briggs Institute and Cochrane databases.
Results: From 6209 journal articles, 62 reviewed papers reported the GP’s and GPN’s role in EoLC or PC practice. Six themes emerged: patient factors; personal GP factors; general practice factors; relational factors; co-ordination of care; availability of services. Four specific settings were identified: aged care facilities, out-of-hours care and resource-constrained settings (rural, and low-income and middle-income countries). Most GPs provide EoLC to some extent, with greater professional experience leading to increased comfort in performing this form of care. The organisation of primary care at practice, local and national level impose numerous structural barriers that impede more significant involvement. There are potential gaps in service provision where GPNs may provide significant input, but there is a paucity of studies describing GPN routine involvement in EoLC.
Conclusions: While primary care practitioners have a natural role to play in EoLC, significant barriers exist to improved GP and GPN involvement in PC. More work is required on the role of GPNs.
Background: Ohana Health Plan, Inc., (OHP) is one of the first managed care organizations offering supportive care services targeted to superutilizers. Bristol Hospice Hawaii, LLC, partnered with OHP to provide interdisciplinary supportive care services to home-bound OHP members.
Objectives: The purpose of this study was to measure symptom relief, satisfaction, resource utilization, and cost savings associated with supportive care.
Design: Prospective study.
Setting: Over 12 months, 27 superutilizer members residing in the community were referred by OHP, 21 members were enrolled into supportive care.
Measurements: Data were collected upon admission and repeatedly thereafter using the Edmonton Symptom Assessment Scale (ESAS) and the Missoula–Vitas Quality of Life Index (MVQOLI). The Family Satisfaction with Advanced Cancer Care (FAMCARE) Scale was administered at discharge. Emergency department (ED) visits and hospital utilization were tracked.
Results: Median age was 63 years; more than half had cardiac diagnoses. Majority of members were Hawaiian and other Pacific Islander. Median length of stay in supportive care was 90 days. Five (23%) members enrolled in hospice following supportive care. Symptom improvement occurred in pain (p < 0.0001), anxiety (p = 0.0052), and shortness of breath (p = 0.0447). This model has shown a 79.5% reduction of ED visits per thousand members and a 75% reduction of hospitalizations per thousand. Overall net savings was 36%. Discussions and documentation of end-of-life wishes increased from 23% to 85%.
Conclusion: Supportive care is highly effective in reducing costs associated with superutilizers. Our experience demonstrates the effectiveness of supportive care approaches in this population through improved care and lower health care costs overall.
Objectives: This study aimed to identify gaps in palliative care (PC) provision across the National Cancer Grid (NCG) centres in India.
Methods: We performed a cross-sectional validated web-based survey on 102 NCG cancer centres (Nov ’17 to April ’18). The survey questionnaire had seven sections collecting data relating to the capacity to provide cancer care and PC, drug availability for pain and symptom control, education, advocacy, and quality assurance activities for PC.
Results: Eighty-nine NCG centres responded for this study—72.5% of centres had doctors with generalist PC training, whereas 34.1% of centres had full-time PC physicians; 53.8% had nurses with 6 weeks of PC training; 68.1% of the centres have an outpatient PC and 66.3% have the facility to provide inpatient PC; 38.5% of centres offer home-based PC services; 44% of the centres make a hospice referral and 68.1% of the centres offer concurrent cancer therapy alongside PC. Among the centres, 84.3% have a licence to procure, store and dispense opioids, but only 77.5% have an uninterrupted supply of oral morphine for patients; 61.5% centres have no dedicated funds for PC, 23.1% centres have no support from hospital administration, staff shortage—69.2% have no social workers, 60.4% have no counsellors and 76.9% have no volunteers. Although end-of-life care is recognised, there is a lack of institutional policy. Very few centres take part in quality control measures.
Conclusions: The majority of the NCG centres have the facilities to provide PC but suffer from poor implementation of existing policies, funding and human resources.
Background: Emergency departments are seeing an increase in acute exacerbations of chronic disease in the older-adult population. The delivery of palliative care in the emergency department can increase goal-concordant care at the end-of-life for this population. New interventions in palliative care for emergency medicine require large, pragmatic, complex health interventions due to the heterogeneous and dynamic environment of emergency departments. These complex interventions must balance fidelity with adaptability, while being rooted in theory, to produce an intervention that can be applied in a variety of contexts.
Methods: Primary Palliative Care for Emergency Medicine (PRIM-ER) is a large, pragmatic, complex health intervention. This paper outlines the conceptual theory-based design as well as the study form and functions of PRIM-ER to exemplify how this complex intervention has balanced fidelity with adaptability.
Results: A form and function matrix was created to highlight the key objectives and tailored intervention components of PRIM-ER. Each intervention component was also linked to one or more elements of the Theory of Planned Behavior to support provider behavior change and the delivery of palliative care services and referrals.
Conclusion: The application of theory and delineation of forms and functions, as well prospective adaptation monitoring of large complex interventions can support the balance of fidelity with adaptability to encourage successful interventions among a variety of clinical environments.
The COVID-19 pandemic is expected to surpass the healthcare system’s capacity to provide intensive care to all patients who deteriorate as a result of the disease. This poses a unique challenge to healthcare teams of rationing care during pandemic when resources are scarce. Healthcare providers will need to acquire new skills in care decision making and effective symptom control for patients who do not receive life-saving measures. In this review, we describe some of the important palliative care considerations that need to be incorporated into COVID-19 pandemic planning. The main aspects to be considered include decision algorithms for rationing care, training on effective symptoms management, alternative delivery methods of palliative care services such as telemedicine and finally death and bereavement support for surviving family members who are likely to be isolated from their loved one at the moment of death.
OBJECTIVE: To explore the trends and utilization of palliative care (PC) service among inpatients with metastatic bladder cancer (MBC).
METHODS: A retrospective, cross-sectional analysis was performed using data from the 2003 to 2014 National Inpatient Sample. Palliative care was identified through International Classification of Diseases, Ninth Revision code V66.7. Demographics, comorbidities, hospital characteristics, tumor-related, and treatment-related factors were compared between patients with and without PC. Multivariable logistic regression was used to explore predictors of PC use.
RESULTS: Among 131 852 patients with MBC, 13 224 (10.03%) received PC. Rate of PC increased from 2.49% in 2003 to 28.39% in 2014 (P < .0001). Similarly, rate of PC in decedents increased from 7.02% in 2003 to 54.86% in 2014 (P < .0001). Patients receiving PC were older, tendered to be white, had more comorbidities, and higher all-patient refined diagnosis-related group mortality risk. Predictors of PC included age (odds ratio [OR]: 1.02; 95% CI: 1.01-1.02; P < .0001), Medicaid (OR: 1.87; 95%.CI: 1.54-2.26; P < .0001), and private (OR: 1.61; 95% CI: 1.40-1.84; P < .0001) insurance, hospitals in the West (OR: 1.33; 95% CI: 1.10-1.61; P = .0032), and Mid-west (OR: 1.46; 95% CI: 1.22-1.75; P = .0032), major (OR: 1.32; 95% CI: 1.11-1.49; P < .0001), and extreme (OR: 2.37; 95% CI: 2.04-2.76; P < .0001) mortality risk. Chemotherapy and mechanical ventilation were related with lower odds of PC use. Palliative care predictors in the decedents were similar to those in overall patients with bladder cancer.
CONCLUSIONS: Palliative care encounter in MBC shows an increasing trend. However, it still remains very low. Disparities in PC use covered age, insurance, and hospital characteristics among metastatic bladder cancer in the United States.
Objective: To examine perceptions of facilitators and barriers to quality measurement and improvement in palliative care programs and differences by professional and leadership roles.
Methods: We surveyed team members in diverse US and Canadian palliative care programs using a validated survey addressing teamwork and communication and constructs for educational support and training, leadership, infrastructure, and prioritization for quality measurement and improvement. We defined key facilitators as constructs rated =4 (agree) and key barriers as those =3 (disagree) on 1 to 5 scales. We conducted multivariable linear regressions for associations between key facilitators and barriers and (1) professional and (2) leadership roles, controlling for key program and respondent factors and clustering by program.
Results: We surveyed 103 respondents in 11 programs; 45.6% were physicians and 50% had leadership roles. Key facilitators across sites included teamwork, communication, the implementation climate (or environment), and program focus on quality improvement. Key barriers included educational support and incentives, particularly for quality measurement, and quality improvement infrastructure such as strategies, systems, and skilled staff. In multivariable analyses, perceptions did not differ by leadership role, but physicians and nurse practitioners/nurses/physician assistants rated most constructs statistically significantly more negatively than other team members, especially for quality improvement (6 of the 7 key constructs).
Conclusions: Although participants rated quality improvement focus and environment highly, key barriers included lack of infrastructure, especially for quality measurement. Building on these facilitators and measuring and addressing these barriers might help programs enhance palliative care quality initiatives’ acceptability, particularly for physicians and nurses.
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably distributed towards urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access.
OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services.
METHODS: The CNA utilized a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion manuscript, entitled "A Methodological Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources."
RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility, high importance recommendations included expanding PPC education for both providers and patients, and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services.
CONCLUSIONS: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.
BACKGROUND: Despite the significant benefits of palliative care (PC) services for cancer patients, multiple challenges hinder the provision of PC services for these patients. Low- and middle-income countries (LMICs) are witnessing a sharp growth in the burden of non-communicable diseases. There is a significant gap between demand and supply of PC in LMICs in current health services. This review aims to synthesise evidence from previous reviews and deliver a more comprehensive mapping of the existing literature about personal, system, policy, and organisational challenges and possible facilitators on the provision of PC services for cancer patients in LMICs.
METHODS: A systematic review of reviews was performed following PRISMA guidelines. PubMed, EMBASE, SCOPUS, PsycINFO, Web of Sciences, CINAHL, and Cochrane Library databases were searched to identify review papers published between 2000 and 2018 that considered challenges and possible facilitators to PC provision. A modified socioecological model was used as a framework for analysing and summarising findings.
RESULTS: Fourteen reviews were included. The reviews varied in terms of aim, settings, and detail of the challenges and possible facilitators. The main challenges of personal and health care systems included knowledge deficits and misunderstandings from patients, families, the general public, and health care providers about PC; and inadequate number of trained workforce. Besides, limited physical infrastructure, insufficient drugs for symptom relief and lack of a comprehensive national plan for implementing PC were the core organisational and policy level challenges that were recognised. Furthermore, the main possible facilitators that were identified included provision of adequate training for health care providers and health education for patients, families and the general public to enhance their knowledge, beliefs, and attitudes to PC. Finally, involvement of policymakers and making drugs available for symptom relief should also be in place to improve the health care systems.
CONCLUSIONS: Understanding challenges to the provision of PC for people with cancer could help in the development of a PC pathway in LMICs. This knowledge could be used as a guide to develop an intervention programme to improve PC. Political influence and support are also required to ensure the sustainability and the provision of high-quality PC.
Introduction: Many patients and their families are hesitant to consult a palliative care (PC) team. In 2014, approximately 6,000,000 people in the United States could benefit from PC, and this number is expected to increase over the next 25 years.
Objectives: The purpose of this review is to shed light on the significance of PC and provide a holistic view outlining both the benefits and existing barriers.
Methods: A literature search was conducted using MEDLINE (PubMed), Cochrane Central Register of Controlled Trials, and Web of Science to identify articles published in journals from 1948 to 2019. A narrative approach was used to search the grey literature.
Discussion: Traditionally, the philosophy behind PC was based on alleviating suffering associated with terminal illnesses; PC was recommended only after other treatment options had been exhausted. However, the tenets of PC are applicable to anyone with a life-threatening illness as it is beneficial in conjunction with traditional treatments. It is now recognized that PC services are valuable when initiated alongside disease-modifying therapy early in the disease course. Studies have shown that PC decreased total symptom burden, reduced hospitalizations, and enabled patients to remain safely at home.
Conclusion: As the population ages and chronic illnesses become more widespread, there continues to be a growing need for PC programs. The importance of PC should not be overlooked despite existing barriers such as the lack of professional training and the cost of implementation. Education and open discussion play essential roles in the successful early integration of PC.
Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization.
This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families.
Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis.
Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients’ openness to their own needs).
Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals’ communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.