Palliative and end-of-life care has come a long way in 20 years. We have seen a number of strategic shifts in thinking about what palliative care is, what it should deliver and to whom. From a service historically designed to address the needs of advanced cancer patients in the last days and weeks of life, the evidence for and practice wisdom of palliative care would dictate that there is an urgent need for early intervention across a spectrum of chronic life-limiting illness and that palliative care has the potential to contribute to the quality experience of living and dying for all citizens.
In the 21st century, with over 40 million people worldwide likely to need palliative or end-of-life care for their life-limiting or chronic illness, the importance of innovative and novel approaches to engaging with communities to meet this need is immutable.
The aspiration for greater integration of palliative care within the wider healthcare system is also implicit in the clear messaging of palliative care as a public health issue. The recent World Health Assembly resolution 67.19 notes:
Realizing the urgent need to include palliation across the continuum of care, especially at the primary care level, recognizing that inadequate integration of palliative care into health and social care systems is a major contributing factor to the lack of equitable access to such care… ( ۶۷th World Health Assembly 2014:2).
The InsupC project conducted under the European Union 7th Framework Programme has striven to meet that need. Through its collaborative approach across several countries, this programme of investigation has identified excellent exemplars of where integration of care planning and care delivery has shown innovation, dynamism and betteroutcomes for the patients and families. There are salient messages which emanate from this important international study for the evolving paradigm which is palliative care.
The first is that palliative and-end-of-life is not about a place of care. Rather, it is about ‘care-in-place’, targeted care, reflecting visible need, wherever the patient and family choose to be.
The second is that it reminds us of the inherent value that palliative and end-of-life care places on culture and responding to the mores of individual difference so that each experience of care is uniquely designed and coherently executed. Hence, the voices of the patient and family experience are embedded in this work.
Third, it reminds us of the importance of multidisciplinary working and realising that integration is about partnership and a willingness to work in flexible and novel ways to improve the patient and families experience. For those living with debilitating illness in the face of changing goals of care, this flexibility is the essence of true integration of care.
Most importantly, integration of palliative and end-of-life care speaks to the very foundation of our discipline and the vision of Cicely Saunders in realising that her model of care could speak to the wider healthcare system and has the ability to transform. The InsupC project is a powerful example of the potential for transformation and speaks to a new world view of what palliative and end-of-life care should be.