Integration of palliative care into home, nursing home and hospital care and into the community
INTEGRATE is a collaboration between researchers from various disciplines and from leading research teams from different Belgian universities (Vrije Universiteit Brussel, Ghent University and Catholic University of Leuven). It is timely and innovative project studying and developing models of integration of palliative care into the health care system in Flanders, Belgium, focusing on public health and health services approaches. The project aims to extend the boundaries of existing research and deliver the necessary scientific evidence and insights regarding integration of early palliative care at different levels of the health care system, for instance in different hospital wards, in the home care setting and in long term care and also to investigate the need for and possibilities of further integration into the community.
Palliative care has been promoted to improve the quality of life of patients and their families facing problems associated with life-threatening illness. It has been identified as the preferable approach to care for the terminally ill and has been defined as a major public health priority for all countries. The applicability of palliative care, as for instance promulgated in the definitions of the WHO and ASCO, is early in the course of life-threatening illness, in conjunction with disease modifying and life prolonging therapies, and not limited to end-of-life or terminal care which refers to the management of patients during that period when death is imminent, and likely to occur within a few hours or at most days. Ideally, the goals of palliative care, eg improving quality of life through comprehensive symptom management and patient and family support, are applied throughout the trajectory of a serious illness.
As well as the growing advocacy for the involvement of palliative care in the disease trajectory, there is also some research that has indicated its benefits. Several studies suggest that many patients with lifelimiting diseases (not only cancer) develop multidimensional needs from diagnosis onwards and may benefit from palliative care early in the disease course. Studies providing an evidence base from observation studies to randomized control trials have indicated that earlier palliative care, provided concurrently with disease-modifying care, improves several outcomes of care (eg fewer burdensome and redundant treatments) and quality of life without negatively affecting survival (the largest RCT study in non-small cell lung cancer even found a positive effect on survival).
Despite the established principle of ‘early’ palliative care and evidence of its benefits, research evaluating the use and timing of palliative care –both as a specialized health service and as a philosophy of care delivered, for instance, by primary health care providers- shows that overall, palliative care is still seen and applied as terminal care. In Belgium, for instance, about 40% of patients who died non-suddenly were referred to a palliative care service and for about half of those referral was less than 10 to 20 days before death. This may indicate even later referrals than in other countries such as US and Australia, were studies (albeit no population based ones) have found time between referral and death to be longer, although referrals can still be considered late in those countries; referrals happened late particularly for non-cancer patients. Using specialist palliative care does not, of course, necessarily reflect whether palliative care was being provided, as, for instance, primary care could also have been aimed at improving the quality of life of patients and families and tackling palliative care needs.
However, mortality follow back studies in Belgium have also looked at the type of care delivered in the final three months of life and demonstrated that, in a majority of cases, the aim of care shifted to a comfort or palliation aim only in the final weeks of life.
As a result of this persisting practice of ‘late’ palliative care, care is still fragmented: there is usually a period of curative or life-prolonging care (delivered by ‘regular’ health services) and almost at the very end a phase with palliative care (delivered by other health care providers who are usually specialized in palliative care). This implies that there is often not enough time to adequately achieve the goals of palliative care, for instance through timely care planning, eliciting options and preferences, clear information and shared decision-making, continuity of care, and dealing with complex and multidimensional needs. An integrated care model in which both forms of care coincide, in answer to the needs of patient and family, and all care providers collaborate in the interest of the patient seems far from being realized, although such a model - as a concept - has already been advocated for more than 10 years.
The main strategic scientific aims are twofold:
1) to develop and evaluate models of integration of early palliative care within existing health services
2) to evaluate the potential for integration of palliative care in the community and develop community interventions to improve palliative care integration in the community
The project involves six different studies, each broken up into a scientific work package and a work package specifically aimed at knowledge translation (valorisation).
The INTEGRATE study is supported by a grant from Flanders Innovation & Entrepreneurship (Strategic Basic Research SBO-IWT nr. 140009).
Monitoring Quality of End-of-Life Care (2006-2010)
FLanders study to Improve End-of-Life Care and Evaluation tools (2011-2015)
Integration of palliative care into home, nursing home and hospital care and into the community (2015-2019)
Flanders project to develop capacity in palliative care across society (2019-2023)