The compassionate world of palliative care is currently going through what one activist has called ‘a winter of discontent’. In a field where a sense of shared and pioneering purpose has long driven development, a measure of disagreement has broken out.
The major advocacy and professional societies in palliative care are lining up on opposite sides of an internal argument. The stakes seem high on the inside. But how much do they matter?
The debate is all about how palliative care should be defined. It is a question that for some time has bubbled under the surface of professional conference presentations, journal editorials and the occasional research study. Now it is getting a wider airing.
What is palliative care?
For me, palliative care is a field which grew out of the modern hospice achievements of the 1970s and 1980s. Hospice captured the public imagination as an approach to the care of dying people and those close to them by focussing on the inter-related aspects of human suffering that can occur in the experience of terminal illness. Its pioneer, Dr Cicely Saunders, coined the term ‘total pain’ to capture this combined form of physical, personal, spiritual and psychological distress. Its practitioners, often religiously motivated, forged their new approach in hospices and other settings outside the mainstream care system, and in the process challenged the system to change. They were successful.
But a prerequisite for progress was a change of name, to something that would break out of the ‘hospice’ associations with charity, religion and ‘homes for the dying’. Something broader, that alluded to the relief of suffering and goals other than care. Palliative Care was adopted as a more transferable term that could capture the approach and be delivered in a variety of contexts and cultures. Soon this idea of improving care for people with life threatening illness was gaining traction around the world. By 1990 the World Health Organization was urging policy makers and care providers to see palliative care as a major global health challenge.
Endorsement by WHO was a major milestone. Now it had ‘arrived’, the field of palliative care required a formal definition:
“The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.” (WHO 1990)
A dozen years later WHO returned to the issue, reacting to developments in the interim. Why should palliative care only kick in when the disease was no longer responding to treatment? Could it be delivered alongside cure-oriented interventions? Might it indeed have a preventative role, anticipating problems that might occur and acting to avoid them? In a second definition from WHO, palliative care thus became:
“An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” (WHO 2002)
This definition still holds today.
But in the margins of these two definitive statements, palliative care people got to work on more nuanced issues.
There was a growing sense of ambivalence about the more direct engagement with death that had been such a feature of the hospice approach. Some of this was fuelled by recognition of the field as a new medical specialty, requiring its own clinical territory, skills, evidence base and a compliant patient group.
Many agreed that the benefits of palliative care should be available to people earlier in the progression of their disease. From 2012 some studies even showed increased survival among those who received palliative care. There was also a strong desire to move beyond cancer, the disease that had defined the approach of the hospice pioneers. Areas of further palliative care specialisation began to appear – in cardiology, renal medicine, stroke, respiratory disease and neurological conditions. The medical model of palliative care was gathering strength.
Likewise, domains of ‘general’, ‘specialised’ and ‘specialist’ palliative care came to be characterised according to the complexity of the problems encountered and the skills needed to address them. Those who focussed on palliative care for older people (‘geripal’) stepped up to the plate and paediatric palliative care gathered its own momentum. Palliative care according to setting (hospital or community based) came to be differentiated.
The life circumstances of patients were also introduced as distinguishing features of palliative care – for homeless people, for those in care homes, for migrants or the inmates of prisons. Special arrangements for palliative care might also be needed in relation to ethnicity and the politics of identity.
A lobby developed explicitly to emphasise the social dimensions of palliative care and to promote the notion of ‘compassionate communities’ as an approach to supporting those affected by life-threatening illness and the chronic problems associated with ageing. The rallying call became ‘palliative care is everybody’s business’. As these debates proliferated, the field spent significant energies on delineating its internal dimensions and seeking to define each of them in turn as sub-variants, needing their own specific codes, guidelines and recognition. Needless to say, many groupings, networks and associations came into being to foster these aims. Following a paper from my own team on limitations to the global spread of the field, I even pondered at one point on the notion of ‘post-colonial palliative care’.
Set-backs and challenges
Meanwhile mainstream health and social care systems at the coal face struggled in the face of mounting need to deliver palliative care (however defined) for all who could benefit from it. One study estimated this might be as much as 82% of all people who die in rich countries.
In the UK, long held up as having the most advanced systems and infrastructure for the delivery of palliative care, other problems emerged. High profile enquiries revealed some of the deficiencies in end of life care in hospitals. Then in 2013, the palliative care flagship initiative known as the Liverpool Care Pathway – an attempt to standardize and roll out the best of hospice care in the acute hospital setting – was subject to an undignified end when a government-commissioned enquiry led to its hasty withdrawal.
Around the world, huge problems still prevail. Vast numbers of people in Low and Middle Income Countries continue to have no access to palliative care of any kind, even in its most basic form. Complex restrictions exist on the availability and prescription of pain relieving drugs. Limited infrastructures are available to support education, training and research and there is a dearth of government policies to assist development.
Steps forward …
In 2014 – a quarter century after WHO first defined palliative care, its governing body – the World Health Assembly (WHA), stepped in and passed a Resolution calling on all governments to integrate palliative care into their health plans. It was a moment for celebration.
Then, hard on the heels of the Resolution came the Lancet Commission Report on Pain and Palliative Care of 2017. It highlighted an ‘access abyss’ in relation to available palliative care and pain relief and used emotive language to deliver a chilling blast of new data, ambitious recommendations and a powerful call to action. The Commission estimated that in 2015, 25.5 million people died with ‘serious health related suffering’ – equivalent to nearly half of all deaths worldwide. In addition, another 35.5 million people experienced serious health related suffering, but did not die.
A new definition
Using this calculus, the number of people in ‘need’ of palliative care in the world at any one time increased dramatically on previous estimates. But at the same time palliative care itself was being pushed far beyond its original focus on care at the end of life. One year after the Commission reported, a leading global advocacy group, the International Association of Hospice and Palliative Care, set about creating a new definition of palliative care – taking its cue from the Commissioners’ recommendation that WHO re-consider its definition of palliative care. Working at arm’s length from WHO, the chosen method involved 450 of its members from 88 countries in a ‘consensus process’ to produce 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”.
One month after its launch on 18 December 2018, just 700 palliative care activists around the world had endorsed the new definition.
More significantly the other global NGO in the palliative care space, the Worldwide Hospice and Palliative Care Alliance, has declined to support it, citing concerns about focus, the consensus process itself and the legitimacy of the definition in relation to the existing 2002 WHO version – which was the one used in support of the WHA Resolution. In turn, the highly influential and resource-rich European Association for Palliative Care is sitting on the fence and has asked its members for feedback on the new definition.
The palliative Twittersphere seems awash with commentary from the rank and file, even if some of its major thought leaders appear reluctant to put their views forward about the new version.
Does it matter?
The conceit may simply be in the notion that there can even be a universal definition of something that is so multi-facetted, global in reach, and still in a phase of rapid evolution. Likewise, it may prove impossible, even undesirable, to define a version of palliative care than can operate in all contexts. Surely culture, wealth, poverty, the presence or absence of universal health coverage, corruption, levels of health system delivery, and a myriad other factors will shape how palliative care is perceived, delivered and defined in any given situation?
On the other hand, clarity of definition seems to be of high importance when advocating to intergovernmental organisations, law-makers, policy- makers, and third party funders. These people may well look harshly on a field that can’t agree internally on its own parameters and goals. It has been a slow process thus far to get buy-in from WHO, the United Nations, major donors and the wider global health community. Muddying the waters now could have significant risks.
I oscillate in my own view, between these two positions. But one underlying worry I have is about the sheer intelligibility of the definitions themselves. Should they not be self-contained and easy to understand?
All three definitions discussed here are followed by a bullet point list of qualifications, illustrations and caveats designed to clarify the headline statement. The 2018 version even needs two footnotes just to explain the meaning of its core terminology. Surely, the definition of something so important should not require supplementary elaboration?
My own definition
So … using my personal ‘internal consensus process’, and based on over a quarter century of immersion as a sociologist in the palliative care field, I came up with my own plain language, no caveats, no footnotes ‘universal’ definition of palliative care. Here it is:
“Most people who have a life-threatening condition can benefit from palliative care, whether or not they are having active treatment. Palliative care helps with personal, social and medical problems associated with potentially mortal illness, especially pain and other distressing symptoms. It assists families and carers and supports them in bereavement. It uses skilled approaches from a trained team, but often involves friends, family members and the wider community. Palliative care improves wellbeing and in some instances has even been shown to extend life”. (David Clark 18 January 2019 -http://endoflifestudies.academicblogs.co.uk/controversies-in-palliative-care-a-matter-of-definition/)
That, for me, describes palliative
care. I’m looking for endorsements …
World Health Organization. (1990) Cancer Pain Relief and Palliative Care. WHO Technical Report Series 804. Geneva: WHO.
Sepúlveda C, Marlin A, Yoshida T, Ullrich A (2002) Palliative Care: The World Health Organization’s Global Perspective. Journal of Pain and Symptom Management, 24(2):91–96.