ABSTRACT
The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.
Subject(s)
Chronic Disease/therapy , Palliative Care , Delivery of Health Care, Integrated , Europe , Health Policy , Humans , Palliative Care/ethics , Palliative Care/legislation & jurisprudenceABSTRACT
OBJECTIVO: Conocer las experiencias de pacientes y cuidadores que conviven con la enfermedad pulmonar obstructiva crónica avanzada, el impacto de sus síntomas y las necesidades de atención que generan en su contexto funcional, emocional y social. DISEÑO: Estudio cualitativo. Perspectiva fenomenológica. Recogida de datos durante 2013-2015. EMPLAZAMIENTO: Atención primaria, hospitalaria e intermedia. Osona (Barcelona). PARTICIPANTES Y/O CONTEXTOS: Diez pacientes de atención primaria con enfermedad pulmonar obstructiva crónica avanzada, 10 cuidadores principales respectivos y 19 profesionales de atención primaria, 2 neumólogos, 2 de cuidados paliativos, implicados en su atención y un psicólogo clínico. MÉTODO: Muestreo teórico. Entrevistas semiestructuradas y en profundidad a pacientes, cuidadores y profesionales (47 entrevistas). RESULTADOS: Las temáticas emergentes identificadas en las entrevistas de pacientes y cuidadores hacen referencia a la disnea, síntoma predominante sin un tratamiento efectivo y con un gran impacto en la vida de pacientes y cuidadores. Un síntoma con gran repercusión funcional, emocional y social al que es necesario adaptarse para sobrevivir. CONCLUSIONES: La atención adecuada de los pacientes con enfermedad pulmonar obstructiva crónica, más allá de las medidas farmacológicas para controlar los síntomas respiratorios, pasa por la comprensión del sufrimiento, las pérdidas y las limitaciones que provoca en sus vidas y las de sus cuidadores. Un abordaje paliativo, holístico y cercano a sus vivencias reales, junto al empoderamiento para la adaptación a los síntomas debilitantes, podría contribuir a una vida mejor en la etapa final de la enfermedad
AIM: To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. DESIGN: Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. SETTING: Primary, secondary and intermediate care. Osona (Barcelona). PARTICIPANTS. The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. METHOD: Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). RESULTS: The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. CONCLUSIONS: Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease
Subject(s)
Humans , Male , Female , Interviews as Topic/methods , Pulmonary Disease, Chronic Obstructive/nursing , Pulmonary Disease, Chronic Obstructive/prevention & control , Pulmonary Disease, Chronic Obstructive/therapy , Dyspnea/complications , Dyspnea/epidemiology , Dyspnea/prevention & control , Caregivers/education , Caregivers/organization & administration , Patient-Centered Care/organization & administration , Palliative Care , Palliative Care/methods , Palliative Care/organization & administration , Patient-Centered Care , 25783/methods , 25783/prevention & control , Primary Health Care , Social Isolation/psychologyABSTRACT
AIM: To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. DESIGN: Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. SETTING: Primary, secondary and intermediate care. Osona (Barcelona). PARTICIPANTS: The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. METHOD: Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). RESULTS: The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. CONCLUSIONS: Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease.
Subject(s)
Attitude to Health , Caregivers , Dyspnea/etiology , Pulmonary Disease, Chronic Obstructive/complications , Aged , Aged, 80 and over , Caregivers/psychology , Family Health , Female , Humans , Male , Pulmonary Disease, Chronic Obstructive/therapy , Severity of Illness IndexABSTRACT
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.
Subject(s)
Palliative Care , World Health Organization , Biomedical Research , Education, Medical, Graduate , Epidemiologic Research Design , Humans , Palliative Care/methods , SpainABSTRACT
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.