By Dr Joseph Hawkins, Consultant in Palliative Medicine, Clinical lead for End of Life Care, Ashford and St Peter’s NHS Foundation Trust. Twitter: @JoeHawk75825077
Britain is becoming a society of two peoples, the kingdom of the well and the kingdom of the sick. A very similar sentiment to those words was written by Susan Sontag the mid-19th century American philosopher and the core sense of her words holds true today in our little island across the Atlantic.
To become sick is to become a citizen of a universe in plain sight yet one who’s laws of physics are never spoken of in normal society. Indeed, to use the term normal society as a separate entity to that of ‘sick society’ demonstrates the manner in which even common parlance reflects a duality of people living side by side but subtly separate. In the kingdom of the sick gravity is higher and drags everyone down unless they have the secret to anti-gravity: money. Of course even money can only help so much, the inequities buried in society remain. These inequalities hover around us, invisible, pervasive and yet detectable through their effect on those they touch. People in the society if the sick have lower life expectancies and lower quality of life, some of this may be unavoidable but society certainly doesn’t help. Whether it’s a lack of access to shops or a lack of understanding around mental illness society remains rigidly opposed to the sick.
Yet with more of us living longer and with those life extensions payed for by investment in living with illness it seems that this is an ever present and growing problem for everyone. The nature of palliative care means that we see these problems every day. In recent times I have found myself wondering what can be done beyond my clinical practice to help highlight and improve these cultural norms. I hope that the act of writing this piece may help but as a specialty I wonder if the supportive nature of our position means allows us the opportunity to do more for society as a whole by influencing the health goals of the organisations in which we work.
Equality seeks to set a standard or rule for all where equity seeks to raise all to the same standard. The challenge of pursuing equality is that it may lead to a spiral of inequality for many who don’t fit the one size fits all approach.
Inequality is an often used term in the health service and rightly so- with waiting lists extending, corridor doctors becoming an excepted term in A&E departments and people increasingly flocking to private clinics to skip the queue. The official response to this is that the NHS continues to preserve the central tenets of free health care and access to all. Behind the curtain we know that this isn’t true, if a patient is in pain then they have two choices-to wait for free care or to pay and be seen at the front of the queue. Palliative care enshrines a goal of bringing all to the front of the queue. Unfortunately even here there are two groups-those who fall under the auspice of specialist palliative care and those limping along under generalist care. Working in a district general hospital I see far more general palliative care patients than specialist and their need is just as great. Sadly the lack of complex symptom control need means that those patients who don’t fall under specialist palliative care are also those who seems to suffer the most, for all of their lack of complex needs. When it comes to suffering I suspect that sometimes simple needs are enough.
Increasing numbers of people, often those with non-malignant diseases, are coming in and out of hospitals in their last illnesses. We know that the non-cancer groups are often those from more deprived socio-economic groups and that they may also have a greater burden of mental health issues. Yet they suffer once for being a part of sick society and then a second time for not benefiting from the excellence of specialist palliative care available.
I am aware that there are initiatives in progress and hospices that provide care to all, regardless of perceived complexity. However, these remain few and I suspect we could all do better talking and learning from those that are out there. I’ve previously written about palliative care as not the road but the map to our patients, perhaps we can also show the way on a larger scale.
Also by this author:
Why can’t we engage more people in future care planning?
How To Tell if Your Patient is Dying.