Palliative care is often thought of as care in the last days or hours of life but in reality it can be offered to anyone with a life limiting illness to support them throughout their disease journey.
Four years ago, we were part of a European consortium awarded a grant of €5,000,000 as part of the European FP7 funded project InSup-C. The grant aimed to look at how palliative care can be integrated into the care of patients with advanced cancer, chronic obstructive pulmonary disease and heart failure. The research was conducted in five European countries including the lead partner in the Netherlands, Belgium, Hungary, Germany and the UK.
As well as reviewing published literature, we conducted interviews with health care professionals, patients and their family carers over a three-month period. 22 palliative care initiatives spread across the different European countries -were selected to participate in the study.
Now we have prepared a Massive Open Online Course (MOOC), a free e-learning course, to share the results of the InSup-C study with examples of best practice in integrated palliative care.
The MOOC is open to anyone with an interest in palliative care and has already been endorsed by Hospice UK.
It includes videos and activities and takes just a couple of hours to complete each week. We have made recommendations about how we might progress integrated palliative care and course members will have a chance to shape these recommendations. We also have a free e-book which accompanies the course.
One key finding from the InSup-C study is that palliative care works best by building relationships between health care professionals and all those involved in the ‘network’ of care.. Once good working relationships are established they provide the environment in which quality care can flourish.
However, identifying when a patient would benefit from a palliative care service is complicated and trying to identify the right time to refer someone to the right person is challenging. This is made more difficult as many health and social care professionals don’t understand what palliative care can offer and indeed palliative care staff spend a lot of time trying to educate their colleagues about this.
Not surprisingly, much care has traditionally been aimed at people with cancer but we did find examples of good palliative care being extended to those with heart failure and advanced lung disease, especially in the UK .
Whatever the care, patients and their family carers thought that some things were particularly important. How up to date information was shared between professionals and services about their condition was crucial. Only one site had electronic record systems which could be used throughout the community. In some countries we found that information shared with patients was sometimes limited. For example, accurate information about prognosis was mainly shared with families rather than with the person concerned in some places and was considered a cultural constraint.
Overall, patients wanted a key worker who could be the point of contact rather than phoning around different people. Where clear co-ordination of care was apparent, this ensured a more streamlined care package. In the UK, community matrons (senior nurses who manage the care of patients with complex needs) were viewed as highly valued roles particularly for patients who lived alone.
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