The UK has been given first place in the Economist Intelligence Unit’s (EIU) 2015 Quality of Death Index, which ranks palliative care across the world. This is the second time in a row that the UK has taken out the top spot – it topped the last index in 2010. The report attributes the UK’s success to its comprehensive national policies, the integration of palliative care into the NHS, a strong hospice movement and deep community engagement.
Yet based on experience, we know that many deaths in the UK have been poorly managed. Hundreds of frail elderly patients died prematurely at the Mid-Staffordshire hospital. The Liverpool Care Pathway – intended to improve patients’ last hours – came under fire for degenerating into a tick-box exercise – where staff seemed more concerned with meeting guidelines than administering appropriate care – and was abandoned. Low-wage staff in elderly “care” are employed on contracts that leave them no time to go beyond performing the minimum care tasks mandated. And the health service ombudsman is disturbed by the regularity of complaints received about poor end of life care.
An EIU spokesperson said that there is still work to do in the UK, such as “ironing out occasional problems with communication or symptom control”. But we believe the problems go much deeper.
The UK’s palliative care services – which take a holistic approach to caring for a person’s physical, mental and spiritual needs – are indeed excellent. But they are based on experiences with cancer care, when in fact more of us will die, not of cancer, but of multiple conditions – often including dementia – in an extended, vulnerable, frail old age.
This results in a very different kind of dying, often implicated in care scandals. So although the UK’s palliative care services are excellent, the quality of death can still be poor for many citizens – particularly for those who aren’t dying of cancer. And while, when comparing Britain’s care services with the rest of the world, the EIU counted how many doctors and nurses have palliative care training, it did not take into account the factors that have led to bad deaths in the UK.
There is clearly a disconnect between the services provided in palliative care and the needs of many people dying in the UK. This confusion can be seen in the way we think and talk about end of life care. Our recent paper on this topic analyses how language defines reality and how policy interacts with scandal.
Compassion vs choice
The government’s 2008 End of Life Care Strategy for England was peppered with the word “choice”. The strategy assumed that to get the kind of death they want, people need to talk about their preferences with their family and doctor.
But again, the strategy was based on expertise with cancer dying – where people often have full cognitive and communicative capacity and face a fairly predictable last few months. In fact, choice at the end of a very long life may be limited by the person’s body and mind, by family relationships and by healthcare bureaucracies whose workings are opaque to patients – and even to those working within them.
Almost immediately after the strategy was released, Mid-Staffs and other care scandals broke. They highlighted not a lack of choice, but poor care. “Care” has become a package to be bought, sold and delivered, rather than a quality of relation between care givers and receivers. And this “bodywork” package is not always fully delivered: scandals cite service users not being given food or drink, not being taken to the toilet when needed, not turned over in bed.
So, in the wake of the care scandals, a new term was added to the healthcare lexicon. Media and politicians suddenly began talking about the need for “compassionate care”: this means caring about the person, not just caring for their body.
Bridging the gap
If “choice” is promoted by healthcare marketeers on the offensive, then “compassion” is a defensive reaction to scandal – the default mantra of those trying to defend the NHS and social care. Following Mid-Staffs, the palliative care lobby continued to promote “choice” as key to a good experience of dying, even though more choice would not have prevented the tragedy. Meanwhile, the media, the Royal College of Nursing, and Sir Robert Francis (tasked to investigate Mid-Staffs) promoted the need for “compassion”.
For some years, the “compassionate care” and “choice” discourses continued in parallel, without much relation to each other. But now, they are getting back in touch. The 2015 Review of Choice in End of Life Care – mandated by the Coalition government and conducted by experts in palliative care – finally admitted that “good care necessarily involves choice and choice is valuable only when there is a foundation of good care”.
Both “choice” and “compassion” approaches face limits and challenges when it comes to caring for those dying in old age. As it stands, we have yet to find a path forward at the middle ground. Some policy actors are beginning to see this. Extending access to palliative care from cancer to other conditions entails rethinking what choice and care mean. The challenge is much bigger than simply “ironing out occasional problems with communication”.