This month I began my journey into advocacy for real with something of a baptism of fire by representing the International Association for Hospice and Palliative Care at the 72nd session of the World Health Organization Regional Committee for Europe in Tel Aviv. As I type this I’m following the 77th Session of the United Nations General Assembly where, as was the case in Tel Aviv, the war in Ukraine is front and centre of the debate. But it isn’t the only threat to our health and safety – climate change, pollutants, covid, monkey pox and polio virus, not to mention factors influencing our lifestyle choices are impacting millions of people worldwide.
Where then does palliative care feature in the narrative? How can we give it a voice amongst the actual and imminent crises that we face, when so many people in the world don’t have access to it? Even in Europe, where10 of the 20 top-performing countries for palliative care are located (Finkelstein et al, 2021) 65% of the population of the region did not have access to these services in 2019 (WHO, 2022). At the Europe Region session, the prevailing narrative was one of cure and, if not cure, then prevention and extending life expectancy. How can palliative care step into this frame of “leave no one behind” when the people we care for for are, de facto, the sickest?
The consensus definition of palliative care goes a long way to addressing this:
Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. (Radbruch et al, 2020)
In this definition, suffering is health-related when it is associated with illness or injury of any kind and it is considered serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/ OR emotional functioning. This applies to patients and their care-givers and as such it is a conceptual model that facilitates the inclusion of palliative care in health-related policy at many levels. Furthermore, it aligns to the life course approach to physical and mental health, which cannot ignore that death and dying are a normal part of the human condition.
At the WHO Europe Session, the Regional Director, Dr Hans Henri Kluge, talked of the post-covid “new normal” of health care being dual track, with emergency preparedness running alongside the prevention and control of non-communicable diseases. Palliative care is one of the few disciplines which can operate with the same core principles along and across both tracks simultaneously. With over 2 million deaths in Europe and counting Covid-19 showed us that we need to manage dying well, and in an ageing population (Europe’s is ageing faster than anywhere else in the world) multiple co-morbidities will, eventually, converge in palliative care. The aim is always to alleviate serious health-related suffering.
Palliative care is an essential. It is not a place to refer to solely when curative treatment has failed or when someone is not ageing in a way which is considered “healthy”. It’s role extends beyond the label of “best supportive care”. Despite it’s etymological roots (palliare = to cloak), palliative care must step into the light and gain it’s rightful recognition in war zones, disaster zones, hospitals, homes and communities.