CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.
OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.
METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.
RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed.
CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Background: General Practitioners (GPs) are the main providers of primary palliative care (PPC). At the same time they are the main initiators of specialised palliative homecare (SPHC). In Germany, little is known about factors which influence GPs in their involvement of SPHC. Aim of our study is to identify factors that drive GPs to give value to and involve SPHC.
Methods: A cross-sectional survey was performed. In 2018, questionnaires were mailed to 6000 randomly selected GPs from eight German federal states, focusing on the extent of GPs’ palliative care activities and their involvement of SPHC.
Results: With a response rate of 19.4% and exclusion of GPs working in SPHC-teams, n = 1026 questionnaires were appropriate for analysis. GPs valued SPHC support as the most “important/very important” for both “technical/invasive treatment measures” (95%) and availability outside practice opening hours (92%).
The most relevant factor influencing perceived SPHC-importance was GPs’ self-reported extent of engagement in palliative care (ß = - 0.283; CI 95% = - 0.384;-0.182), followed by the perceived quality of utilised SPHC (ß = 0.119; CI 95% = 0.048;0.190), involvement in treatment of palliative patients after SPHC initiation (ß = 0.088; CI 95% = 0.042;0.134), and conviction that palliative care should be a central part of GPs’ work (ß = - 0.062; CI 95% = - 0.116;-0.008). Perceived SPHC-importance is also associated with SPHC-referrals (ß =0.138; p < 0.001). The lower the engagement of GPs in palliative care, the more they involve SPHC and vice versa.
Conclusions: GPs with low reported activity in palliative care are more likely to initialise SPHC for palliative care activities they do not deliver themselves for various reasons, which might mean that the involvement of SPHC is substitutive instead of complementary to primary palliative care. This finding and its interpretation should be given more attention in the future policy framework for (specialised) palliative homecare.
Background: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life.
Methods: Oncology patients (ages 0–25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015–06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017–06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared.
Results: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084).
Conclusion: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.
Background: Providing equitable care to patients in need across the life course is a priority for many healthcare systems.
Aim: To estimate socioeconomic inequality trends in the proportions of decedents that died in the community and that received palliative care within 30 days of death (including home visits and specialist/generalist physician encounters).
Design: Cohort study based on health administrative data. Socioeconomic position was measured by area-level material deprivation. Inequality gaps were quantified annually and longitudinally using the slope index of inequality (absolute gap) and relative index of inequality (relative gap).
Setting/Participants: A total of 729,290 decedents aged >=18 years in Ontario, Canada from 2009 to 2016.
Results: In 2016, the modelled absolute gap (corresponding 95% confidence interval) between the most- and least-deprived neighbourhoods in community deaths was 4.0% (2.9–5.1%), which was 8.6% (6.2–10.9%) of the overall mean (46.6%). Relative to 2009, these inequalities declined modestly. Inequalities in 2016 were evident for palliative home visits (6.8% (5.8–7.8%) absolute gap, 26.3% (22.5–30.0%) relative gap) and for physician encounters (6.8% (5.7–7.9%) absolute gap, 13.2% (11.0–15.3%) relative gap), and widened from 2009 for physician encounters only on the absolute scale. Inequalities varied considerably across disease trajectories (organ failure, terminal illness, frailty, and sudden death).
Conclusion: Key measures of end-of-life care are not achieved equally across socioeconomic groups. These data can be used to inform policy strategies to improve delivery of palliative and end-of-life services.
BACKGROUND: Despite evidence that family members' support to each other can be of importance to its members, there are limited studies of factors related to family members' sense of such support during palliative care.
AIM: Based on the family systems approach, we evaluated which factors were associated with family members' sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support.
DESIGN: A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care.
METHODS: Generalised linear models were used to evaluate individual factors related to family members' sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses.
RESULTS: Nineteen variables were identified that were significantly associated with the family members' sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members.
CONCLUSIONS: Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.
Background: Difficulties in prognostication are common deterrents to palliative care among dementia patients. This study aimed to evaluate the effectiveness of palliative care in reducing the extent of utilization of medical services and the potential risk factors of mortality among dementia patients receiving palliative care.
Methods: We surveyed dementia patients involved in a palliative care program at a long-term care facility in Taipei, Taiwan. We enrolled 57 patients with advanced dementia (clinical dementia rating = 5 or functional assessment staging test stage 7b). We then compared the extent of their utilization of medical services before and after the provision of palliative care. Based on multivariable logistic regression, we identified potential risk factors before and after the provision of palliative care associated with 6-month mortality.
Results: The utilization of medical services was significantly lower among dementia patients after the provision of palliative care than before, including visits to medical departments (p < 0.001), medications prescribed (p < 0.001), frequency of hospitalization (p < 0.001), and visits to the emergency room (p < 0.001). Moreover, patients dying within 6 months after the palliative care program had a slightly but not significantly higher number of admissions before receiving hospice care (p = 0.058) on univariate analysis. However, no significant differences were observed in multivariate analysis.
Conclusions: The provision of palliative care to dementia patients reduces the extent of utilization of medical services. However, further studies with larger patient cohorts are required to stratify the potential risk factors of mortality in this patient group.
The timing of palliative care initiation may be more appropriately directed using a needs-based approach, instead of a prognostically driven one. Jewish Law or Halachah ("the way") upholds a strong commitment to the sanctity of life and teaches that the duty to prolong life supersedes the duty to end suffering prematurely, unless one is expected to imminently die. This intersection of palliative care and a reliance on prognostic triggers with an individual's observance of religious traditions complicates matters nearing the end-of-life. A recent pilot study by Sternberg et al. of 20 patients with advanced dementia in Israel found that home hospice care significantly reduced distressing symptoms, caregiver burden and hospitalization and teaches us important lessons about some of the essential elements to providing excellent palliative care at home, including the 24/7 availability of healthcare providers outside of the emergency department. In light of specific religious practices, palliative care should strive to incorporate a patient's specific religious observance as part of high-quality end-of-life care.
BACKGROUND: Improvement in quality of life (QoL) of patients is one of the most important goals of palliative care, but evaluation of QoL of patients is difficult.
AIM: To evaluate QoL of patients who died at home or in a hospital.
METHODS: We administered the Good Death Inventory (10 core and 8 optional domains) to the bereaved families of patients who died at home or in a hospital. A total of 107 bereaved families undertook a survey.
FINDINGS: If a bereaved family chose 'somewhat agree', 'agree' or 'absolutely agree', the answer was regarded as a 'satisfactory answer'. Regarding the 10 core domains, of patients who died in a hospital, <50% respondents gave a 'satisfactory answer' to three questions, whereas of patients who died at home, >60% of respondents gave a 'satisfactory answer' to seven questions. Regarding the eight optional domains, of patients who died in a hospital, <50% respondents gave a 'satisfactory answer' to five questions, whereas of patients who died at home, >60% of respondents gave a 'satisfactory answer' to four questions.
CONCLUSIONS: QoL of patients who died at home appeared higher than that of those who died in a hospital. Patients prefer to remain at home rather than in a hospital, probably because at home they are surrounded by familiar things and can live according to their usual habits.
BACKGROUND: Limited research has characterized team-based models of home palliative care and the outcomes of patients supported by these care teams.
CASE PRESENTATION: A retrospective case series describing care and outcomes of patients managed by the London Home Palliative Care Team between May 1, 2017 and April 1, 2019.
CASE MANAGEMENT: The London Home Palliative Care (LHPC) Team care model is based upon 3 pillars: 1) physician visit availability 2) active patient-centered care with strong physician in-home presence and 3) optimal administrative organization.
CASE OUTCOMES: In the 18 month study period, 354 patients received care from the London Home Palliative Care Team. Most significantly, 88.4% (n = 313) died in the community or at a designated palliative care unit after prearranged direct transfer; no comparable provincial data is available. 21.2% (n = 75) patients visited an emergency department and 24.6% (n = 87) were admitted to hospital at least once in their final 30 days of life. 280 (79.1%) died in the community. These values are better than comparable provincial estimates of 62.7%, 61.7%, and 24.0%, respectively.
CONCLUSION: The London Home Palliative Care (LHPC) Team model appears to favorably impact community death rate, ER visits and unplanned hospital admissions, as compared to accepted provincial data. Studies to determine if this model is reproducible could support palliative care teams achieving similar results.
Background: Current policies recommend integrating home care and palliative care to enable patients to remain at home and avoid unnecessary hospital admission and emergency department (ED) visits. The Italian health care system had implemented integrated palliative home care (IHPC) services to guarantee a comprehensive, coordinated approach across different actors and to reduce potentially avoidable ED visits. This study aimed to analyze the trajectories of ED visit rates among patients receiving IHPC in the Italian healthcare system, as well as the association between socio-demographic, health supply, and clinical factors.
Methods: A pooled, cross-sectional, time series analysis was performed in a large Italian region in the period 2013–2017. Data were taken from two databases of the official Italian National Information System: Home Care Services and ED use. A clinical record is opened at the time a patient is enrolled in IHPC and closed after the last service is provided. Every such clinical record was considered as an IHPC event, and only ED visits that occurred during IHPC events were considered.
Results: The 20,611 patients enrolled in IHPC during the study period contributed 23,085 IHPC events; =1 ED visit occurred during 6046 of these events. Neoplasms accounted for 89% of IHPC events and for 91% of ED visits. Although there were different variations in ED visit rates during the study period, a slight decline was observed for all diseases, and this decline accelerated over time (b = - 0.18, p = 0.796, 95% confidence interval [CI] = - 1.59;1.22, b-squared = - 1.25, p < 0.001, 95% CI = -1.63;-0.86). There were no significant predictors among the socio-demographic factors (sex, age, presence of a non-family caregiver, cohabitant family members, distance from ED), health supply factors (proponent of IHPC) and clinical factors (prevalent disorder at IHPC entry, clinical symptoms).
Conclusion: Our results show that use of ED continues after enrollment in IHPC, but the trend of this use declines over time. As no significant predictive factors were identified, no specific interventions can be recommended on which the avoidable ED visits depend.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
OBJECTIVES: To assess the effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on symptom burden, to explore intervention mechanisms through patient and intervention provider characteristics and to assess long-term survival and place of death.
MEASURES: The effect of a systematic, fast-track transition from oncological treatment to specialised palliative care at home on patient symptom burden was studied in the Domus randomised clinical trial. Participants had incurable cancer and limited treatment options. The intervention was provided by specialised palliative home teams (SPT) based in hospice or hospital and was enriched with a psychological intervention for patient and caregiver dyad. Symptom burden was measured with Edmonton Symptom Assessment System (ESAS-r) at baseline, 8 weeks and 6 months follow-up and analysed with mixed models. Survival and place of death was analysed with Kaplan-Meier and Fisher's exact tests.
RESULTS: The study included 322 patients. Tiredness was significantly improved for the Domus intervention group at 6 months while the other nine symptom outcomes were not significantly different from the control group. Exploring the efficacy of intervention provider demonstrated significant differences in favour of the hospice SPT on four symptoms and total symptom score. Patients with children responded more favourably to the intervention. The long-term follow-up demonstrated no differences between the intervention and the control groups regarding survival or home deaths.
CONCLUSIONS: The Domus intervention may reduce tiredness. Moreover, the intervention provider and having children might play a role concerning intervention efficacy. The intervention did not affect survival or home deaths.
CONTEXT: Hospice care focuses on improving the quality of end-of-life care and respecting patients' preferences regarding end-of-life treatment. The impact of coronavirus disease 2019 (COVID-19) on the utilization of hospice services is unknown.
OBJECTIVES: To investigate the utilization of hospice care services before and during the COVID-19 pandemic.
METHODS: All patients (n = 19,900) cared for at Taipei City Hospital from January 2019 to April 2020 were divided into three time points: January-April 2019 (before COVID-19), May-December 2019 (interim), and January-April 2020 (during COVID-19). This cohort study compared the monthly utilization of hospice services before and during the COVID-19 pandemic.
RESULTS: There was no significant difference in hospice home visits (194 vs. 184; P = 0.686) and new enrollments (15 vs. 14; P = 0.743) to hospice home care before and during the pandemic. However, the bed occupancy rate in hospice units in the hospital was significantly reduced from 66.2% before the pandemic to 37.4% during the pandemic (P = 0.029), whereas that in non-hospice units had a non-significant decrease from 81.6% before the pandemic to 71.8% during the pandemic (P = 0.086). During the pandemic, the number of inpatient days in hospice units was affected more severely than in non-hospice units (-42.4% vs.-10.9%; P = 0.029).
CONCLUSIONS: This study suggests that hospice home care services were maintained during the COVID-19 pandemic, while the utilization of hospice inpatient care services reduced. Home care for hospice patients is an essential component of palliative care during a pandemic.
BACKGROUND: Home is often deemed to be the preferred place of death for most patients. Knowing the factors related to the actualization of a preferred home death may yield evidence to enhance the organization and delivery of healthcare services.
OBJECTIVE: The objectives of this study were to measure the congruence between a preferred and actualized home death among cancer patients in receipt of home-based palliative care in Canada and explore predictors of actualizing a preferred home death.
METHODS: A longitudinal prospective cohort design was conducted. A total of 290 caregivers were interviewed biweekly over the course of patients' palliative care trajectory between July 2010 and August 2012. Cross-tabulations and multivariate analyses were used in the analysis.
RESULTS: Home was the most preferred place of death, and 68% of patients who had voiced a preference for home death had their wish fulfilled. Care context variables, such as living with others and the intensity of home-based nursing visits and hours of care provided by personal support workers (PSW), contributed to actualizing a preferred home death. The intensity of emergency department visits was associated with a lower likelihood of achieving a preferred home death.
CONCLUSIONS: Higher intensity of home-based nursing visits and hours of PSW care contribute to the actualization of a preferred home death.
IMPLICATIONS FOR PRACTICE: This study has implications for policy decision-makers and healthcare managers. Improving and expanding the provision of home-based PSW and nursing services in palliative home care programs may help patients to actualize a preferred home death.
BACKGROUND: The interest in physiotherapy programs for individuals in hospice is increasing. The aim of our study was to assess the impact of a multi-component, individualized physiotherapy program on the functional and emotional conditions and quality of life of patients receiving hospice services in the home.
METHODS: The study included 60 patients (mean 66.3 years) receiving hospice services in the home. A model of a physiotherapy program was designed, including breathing, strengthening, transfer, gait, balance, functional, and ergonomic exercises, as well as an adaptation of the patient's living environment to functional needs. The tests were performed before and after the intervention. The study used the Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) scales, the World Health Organization Quality of Life - Bref (WHOQOL-BREF), the Visual Analogue Scale (VAS) pain scale, the Tinetti POMA Scale, and the Geriatric Depression Scale (GDS). To enable comparison of our results worldwide, a set of International Classification of Functioning, Disability and Health (ICF) categories was used.
RESULTS: The average functional level of the ADL (mean 2.9) and the IADL (mean 11.9), as well as the WHOQOL-BREF (mean 46.4) of the patients before the intervention were low, whereas the intensity of pain (VAS mean 5.8), the risk of falling (Tinetti mean 8.2), and depression (GDS mean 16.7) were recorded as high. After the completion of the intervention program, a significant improvement was found in the ADL (mean 4.0), IADL (mean 13.9), WHOQOL-BREF (mean 52.6), VAS (mean 5.1), risk of falling (Tinetti mean 12.3), and GDS (mean 15.7) scores.
CONCLUSIONS: The physiotherapeutic intervention had a significant impact on improving the performance of ADL, as well as the emotional state and quality of life of patients receiving hospice services in the home. The results of our research provide evidence of the growing need for physiotherapy in individuals in hospice and for comprehensive assessment by means of ICF.
BACKGROUND: While many Aotearoa/New Zealanders are receiving excellent palliative care the Pacific populations have limited access to available hospice and palliative care services. Little research has been conducted to identify barriers unique to Pacific populations accessing these services. The purpose of this study was to explore key stakeholders' perspectives on the determinants of low access among Pacific populations to these services.
METHODS: Forty-five semi-structured interviews were conducted face-to-face with hospice patients and their families, hospice/health providers and key informants from the Auckland and Wellington region of Aotearoa/New Zealand. The interviews were recorded and transcribed verbatim and a thematic analysis was carried out by identifying, coding and categorising patterns in the data. Identified themes were then discussed further to determine the relevance of the data grouped by theme.
RESULTS: Five interrelated themes affecting access emerged: perception of hospice (often negative) through lack of accurate information, but changing; families' role to look after their own and sick elderly; hospice experiences; continuity of care in the community and the need for information and communication.
CONCLUSION: Hospice and associated palliative care services are under-utilised and commonly misunderstood among Pacific populations in Aotearoa/New Zealand. There is active support following appropriate information received, hence the need for community education and culturally appropriate hospice and palliative services. Inadequate inter-professional communication contributes to polypharmacy and inefficiency in continuity of care across all levels. The Pacific individual is one component of a collective that is critical in major decisions in end-of-life and life changing situations. The findings may guide policies and further research to improve Hospice and Palliative services in Aotearoa/New Zealand.
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region.
DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis.
SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA.
PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study.
RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death.
CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.
Retaining registered nurses (RNs) in post during their first year of employment is a problem for the Marie Curie Home Nursing Service. This article describes an initiative undertaken by Marie Curie Northern Ireland's (NI) Regional Nursing Service's manager in conjunction with clinical management and RNs to develop a peer-mentoring programme that would support newly appointed RNs during their first 3 months and strengthen the possibility that they would remain in post. A scoping exercise of key stakeholders clarified that peer mentoring could address the sense of remoteness and isolation that newly appointed nurses expressed as lone workers. RNs taking on a peer-mentoring role received additional remuneration during the 3-month period. Through the initiative, the stakeholders recognised that the peer-mentoring programme should be simple, responsive to the needs of the newly appointed nurses and provide the necessary support and guidance when required.
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.