Ethical Challenges of Early Identification of Advanced Chronic Patients in Need of Palliative Care: The Catalan Experience.

Palliative care must be early applied to all types of advanced chronic and life limited prognosis patients, present in all health and social services. Patients' early identification and registry allows introducing palliative care gradually concomitant with other measures. Patients undergo a systematic and integrated care process, meant to improve their life quality, which includes multidimensional assessment of their needs, recognition of their values and preferences for advance care planning purposes, treatments review, family care, and case management. Leaded by the National Department of Health, a program for the early identification of these patients has been implemented in Catalonia (Spain). Although the overall benefits expected, the program has raised some ethical issues. In order to address these challenges, diverse institutions, including bioethics and ethics committees, have elaborated a proposal for the program's advantages. This paper describes the process of evaluation, elaboration of recommendations, and actions done in Catalonia.

Utility of the NECPAL CCOMS-ICO© tool and the Surprise Question as screening tools for early palliative care and to predict mortality in patients with advanced chronic conditions: A cohort study.

BACKGROUND: The Surprise Question (SQ) identifies patients with palliative care needs. The NECPAL CCOMS-ICO© (NECPAL) tool combines the Surprise Question with additional clinical parameters for a more comprehensive assessment. The capacity of these screening tools to predict mortality is still unknown. AIM: To explore the predictive validity of the NECPAL and SQ to determine 12- to 24-month mortality. DESIGN: Longitudinal, prospective and observational cohort study. SETTING/PARTICIPANTS: Three primary care centres, one general hospital, one intermediate care centre, and four nursing homes. Population cohort with advanced chronic conditions and limited life prognosis. Patients were classified according to SQ and NECPAL criteria and followed for 24 months. RESULTS: Data available to assess 1059 of 1064 recruited patients (99.6%) at 12 and 24 months: 837 patients were SQ+ and 780 were NECPAL+. Mortality rates at 24 months were as follows: 44.6% (SQ+) versus 15.8% (SQ-) and 45.8% (NECPAL+) versus 18.3% (NECPAL-) ( p = 0.000). SQ+ and NECPAL+ identification was significantly correlated with 24-month mortality risk (hazard ratios: 2.719 and 2.398, respectively). Both tools were highly sensitive (91.4, CI: 88.7-94.1 and 87.5, CI: 84.3-90.7) with high negative predictive values (84.2, CI: 79.4-89.0 and 81.7, CI: 77.2-86.2), with low specificity and positive predictive value. The prognostic accuracy of SQ and NECPAL was 52.9% and 55.2%, respectively. The predictive validity was slightly better for NECPAL. CONCLUSION: SQ and NECPAL are valuable screening instruments to identify patients with limited life prognosis who may require palliative care. More research is needed to increase its prognostic utility in combination with other parameters.

The Catalonia WHO Demonstration Project of Palliative Care: Results at 25 Years (1990-2015).

In 2015, the World Health Organization (WHO) Demonstration Project on Palliative Care in Catalonia (Spain) celebrated its 25th anniversary. The present report describes the achievements and progress made through this project. Numerous innovations have been made with regard to the palliative care (PC) model, organization, and policy. As the concept of PC has expanded to include individuals with advanced chronic conditions, new needs in diverse domains have been identified. The WHO resolution on "Strengthening of palliative care as a component of comprehensive care throughout the life course," together with other related WHO initiatives, support the development of a person-centered integrated care PC model with universal coverage. The Catalan Department of Health, together with key institutions, developed a new program in the year 2011 to promote comprehensive and integrated PC approach strategies for individuals with advanced chronic conditions. The program included epidemiologic research to describe the population with progressive and life-limiting illnesses. One key outcome was the development of a specific tool (NECPAL CCOMS-ICO(©)) to identify individuals in the community in need of PC. Other innovations to emerge from this project to improve PC provision include the development of the essential needs approach and integrated models across care settings. Several educational and research programs have been undertaken to complement the process. These results illustrate how a PC program can respond and adapt to emerging needs and demands. The success of the PC approach described here supports more widespread adoption by other key care programs, particularly chronic care programs.

Chronic and integrated care in Catalonia.

INTRODUCTION: The Chronicity Prevention and Care Programme set up by the Health Plan for Catalonia 2011-2015 has been an outstanding and excellent opportunity to create a new integrated care model in Catalonia. People with chronic conditions require major changes and transformation within the current health and social system. The new and gradual context of ageing, increase in the number of chronic diseases and the current fragmented system requires this transformation to be implemented. METHOD: The Chronicity Prevention and Care Programme aims to implement actions which drive the current system towards a new scenario where organisations and professionals must work collaboratively. New tools should facilitate this new context- or work-like integrated health information systems, an integrative financing and commissioning scheme and provide a new approach to virtual care by substituting traditional face-to-face care with transfer and shared responsibilities between patients, citizens and health care professionals. RESULTS: It has been observed some impact reducing the rate of emergency admissions and readmission related to chronic conditions and better outcome related to better chronic disease control. Some initiative like the Catalan Expert Patient Program has obtained good results and an appropriate service utilization. DISCUSSION: The implementation of a Chronic Care Program show good results but it is expected that the new integrated health and social care agenda could provoke a real change and transformation. Some of the results related to better health outcomes and a decrease in avoidable hospital admissions related to chronic conditions confirm we are on the right track to make our health and social system more sustainable for the decades to come.

[Accreditation model for acute hospital care in Catalonia, Spain]. / Modelo de acreditación de centros de atención hospitalaria aguda de Cataluña.

The implementation of an accreditation model for healthcare centres in Catalonia which was launched for acute care hospitals, leaving open the possibility of implementing it in the rest of lines of service (mental health and addiction, social health, and primary healthcare centres) is described. The model is based on the experience acquired over more tan 31 years of hospital accreditation and quality assessment linked to management. In January 2006 a model with accreditation methodology adapted to the European Foundation for Quality Management (EFQM) model was launched. 83 hospitals are accredited, with an average of 82.6% compliance with the standards required for accreditation. The number of active assessment bodies is 5, and the accreditation period is 3 years. A higher degree of compliance of the so-called "agent" criteria with respect to "outcome" criteria is obtained. Qualitative aspects for implementation to be stressed are: a strong commitment both from managers and staff in the centres, as well as a direct and fluent communication between the accreditation body (Ministry of Health of the Government of Catalonia) and accredited centres. Professionalism of audit bodies and an optimal communication between audit bodies and accredited centres is also added.

Modelo de acreditación de centros de atención hospitalaria aguda de Cataluña / Accreditation model for acute hospital care in Catalonia, Spain

Se describe la implantación de un modelo de acreditación para centros sanitarios de Catalunya que se inicia para hospitales de agudos y deja abierta la posibilidad de aplicación al resto de líneas de servicios: centros de salud mental y adicciones, sociosanitarios y atención primaria. El modelo se basa en la experiencia adquirida a lo largo de más de 31 años de acreditación de hospitales y de la evaluación de la calidad ligada a la gestión. En enero de 2006 se pone en marcha un modelo con metodología de acreditación, adaptado al modelo de la European Foundation for Quality Management (EFQM). Se acreditan 83 hospitales, con una media del 82,6% de cumplimiento de los estándares necesarios para acreditarse. El número de entidades evaluadoras en activo es de 5 y el período de acreditación es de 3 años. Se obtiene un mayor grado de cumplimiento de los denominados criterios "de agentes" respecto a los "de resultados". Como aspectos cualitativos, destacar en la implantación una gran implicación, tanto a nivel directivo como del personal de los centros, así como una comunicación directa y fluida entre órgano acreditador (Departament de Salut) y centros acreditados. Se añade también la profesionalidad de las entidades auditoras y una óptima comunicación entre entidades auditoras y centros acreditados (AU)

The implementation of an accreditation model for healthcare centres in Catalonia which was launched for acute care hospitals, leaving open the possibility of implementing it in the rest of lines of service (mental health and addiction, social health, and primary healthcare centres) is described. The model is based on the experience acquired over more tan 31 years of hospital accreditation and quality assessment linked to management. In January 2006 a model with accreditation methodology adapted to the European Foundation for Quality Management (EFQM) model was launched. 83 hospitals are accredited, with an average of 82.6% compliance with the standards required for accreditation. The number of active assessment bodies is 5, and the accreditation period is 3 years. A higher degree of compliance of the so-called "agent" criteria with respect to "outcome" criteria is obtained. Qualitative aspects for implementation to be stressed are: a strong commitment both from managers and staff in the centres, as well as a direct and fluent communication between the accreditation body (Ministry of Health of the Government of Catalonia) and accredited centres. Professionalism of audit bodies and an optimal communication between audit bodies and accredited centres is also added (AU)

Prevalence and characteristics of patients with advanced chronic conditions in need of palliative care in the general population: a cross-sectional study.

BACKGROUND: Of deaths in high-income countries, 75% are caused by progressive advanced chronic conditions. Palliative care needs to be extended from terminal cancer to these patients. However, direct measurement of the prevalence of people in need of palliative care in the population has not been attempted. AIM: Determine, by direct measurement, the prevalence of people in need of palliative care among advanced chronically ill patients in a whole geographic population. DESIGN: Cross-sectional, population-based study. MAIN OUTCOME MEASURE: prevalence of advanced chronically ill patients in need of palliative care according to the NECPAL CCOMS-ICO(©) tool. NECPAL+ patients were considered as in need of palliative care. SETTING/PARTICIPANTS: County of Osona, Catalonia, Spain (156,807 inhabitants, 21.4% > 65 years). Three randomly selected primary care centres (51,595 inhabitants, 32.9% of County's population) and one district general hospital, one social-health centre and four nursing homes serving the patients. Subjects were all patients attending participating settings between November 2010 and October 2011. RESULTS: A total of 785 patients (1.5% of study population) were NECPAL+: mean age = 81.4 years; 61.4% female. Main disease/condition: 31.3% advanced frailty, 23.4% dementia, 12.9% cancer (ratio of cancer/non-cancer = 1/7), 66.8% living at home and 19.7% in nursing home; only 15.5% previously identified as requiring palliative care; general clinical indicators of severity and progression present in 94% of cases. CONCLUSIONS: Direct measurement of prevalence of palliative care needs on a population basis is feasible. Early identification and prevalence determination of these patients is likely to be the cornerstone of palliative care public health policies.

How to design and implement palliative care public health programmes: foundation measures. An operational paper by the WHO Collaborating Centre for Public Health Palliative Care Programmes at the Catalan Institute of Oncology.

This paper summarises the recommendations of the WHO Collaborating Centre for Palliative Care Public Health Programmes with respect to design and implementation of palliative care national or regional public health palliative care programmes in their initial phases. We describe the elements of a programme (leadership and aims; needs and context assessment; definition of the target patients; general measures in conventional services; specialist services in different settings; sectorised networks; education and training; availability and accessibility of opioids and essential drugs; legislation; standards; budget; valuation and improvement of quality; and evaluation of results and indicators) and the specific recommendations to implement the first steps of each component. Palliative care planning needs to be systematic, inserted in all levels of the healthcare system and adapted to the cultural and organisational status of the system. Coverage for all types of patients in need, together with equity and quality, are the main aims of programmes.

Identifying patients with chronic conditions in need of palliative care in the general population: development of the NECPAL tool and preliminary prevalence rates in Catalonia.

Palliative care (PC) has focused on patients with cancer within specialist services. However, around 75% of the population in middle-income and high-income countries die of one or more chronic advanced diseases. Early identification of such patients in need of PC becomes crucial. In this feature article we describe the initial steps of the NECPAL (Necesidades Paliativas [Palliative Needs]) Programme. The focus is on development of the NECPAL tool to identify patients in need of PC; preliminary results of the NECPAL prevalence study, which assessed prevalence of advanced chronically ill patients within the population and all socio-health settings of Osona; and initial implementation of the NECPAL Programme in the region. As first measures of the Programme, we present the NECPAL tool. The main differences from the British reference tools on which NECPAL is based are highlighted. The preliminary results of the prevalence study show that 1.45% of the total population and 7.71% of the population aged over 65 are 'surprise question' positive, while 1.33% and 7.00%, respectively, are NECPAL positive, and surprise question positive with at least one additional positive parameter. More than 50% suffer from geriatric pluri-pathology conditions or dementia. The pilot phase of the Programme consists of developing sectorised policies to improve PC in three districts of Catalonia. The first steps to design and implement a Programme to improve PC for patients with chronic conditions with a public health and population-based approach are to identify these patients and to assess their prevalence in the healthcare system.