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.
Growing complexity
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.
Implications
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.
Interesting blog David. There seem to be 4 elements to your proposed definition:-
1) Who is palliative care for?
2) What does palliative care seek to address?
3) Who provides palliative care?
4) What are the outcomes of palliative care?
I think 3) is missing something. It includes what sounds like specialist palliative care (“skilled approaches from a trained team”) and informal community supports (“friends, family members… wider community”). I’m not sure this definition adequately captures GPs, district nurses, care home workers, general hospital ward staff – those people who provide most of the (professional) care for people with a life threatening condition.
Perhaps more could be added, or alternatively there could be a version which doesn’t seek to answer 3) Who provides palliative care?
Thanks Mark. You have captured the task I set myself very nicely. The use of ‘team’ was to capture a variety of options – from the Neighbourhood Networks, to the primary care team, or the ward team in the hospital. I thought it better to avoid specific settings or occupations or the word volunteer, but rather to emphasise ‘team’ which is a core value and approach in palliative care.
David , there may be a missing element in the third section as defined by Mark although you may have inferred it in your “trained team” and/or “wider community”. The role of the spiritual in palliative care, even for those who have only a residual memory and a loose connection to the formal structures of religion, may be a factor in promoting the effectiveness of the medical interventions and enabling family support. Spiritual support may also be essential to the decision making around the cessation of curative intervention and the acceptance of the progress to death. The inclusion of the spiritual mentor/guide within the trained team and the gateways to allow them to participate alongside other disciplines may be difficult within the medical setting and more accepted in community care and residential hospice care but should not be overlooked.
Nice point David. As you have seen, I am not defining the makeup or setting of the team. I think the more salient question is whether the word ‘spiritual’ should be in the list of issues to which palliative care is making a response. I chose not to include spiritual and did the same with ‘psychological’. In my mind they are subsumed beneath ‘personal’ and to an extent ‘social’.
A thought-provoking piece David, as well as the comments above, and a helpful contribution to this important discussion. Clarity around the definitions is also very useful with regard to efforts to raise awareness and increase understanding of palliative care, for example, our own annual Palliative Care Week campaign across Ireland https://aiihpc.org/our_work/public-awareness/ With any of the definitions, there is a challenge in translating the language into something which is clear, concise and easily understandable for public facing communications. In relation to your definition, I’m wondering if people would readily understand ‘potentially mortal illness’. Would it be easier to understand ‘illness which could potentially cause death’?
Yes, the use of the word ‘mortal’ doesn’t resonate with me. I think Cicely Saunders would be mortified to know that her concept of hospice care had morphed into specialist palliaitve care units in acute hospital settings. There has been a significant departure form the notion that one is supported to die well with comfort and peace and minimal intervention. We have succeeded in living longer and dying longer; the ‘slow’ death movement.
Thanks Vicki. And see my reply to Brendan on ‘mortal’. In fact Cicely was rather keen on these specialist units and supported the very first one in Montreal from the mid-1970s. The ‘slow death movement’ is a very interesting term.
Thanks Brendan. There have been other comments that ‘death’ and ‘dying’ are nowhere to be seen in the definition. I am very sympathetic to that. ‘Mortal illness’ was my rather flawed attempt to acknowledge these issues, but it doesn’t seem to be working.
Happens to be the focus of my seminar at the Cecily Saunders Institute Wednesday 23rd January 2019 at 4.00pm. My concern is that palliative care is now taking responsibility for all rehabilitation’s patients, given the most recent definition. I agree that palliative expertise is often needed, but so it an active treatment approach. I’ll release my definitions after the seminar – which may well alter them.
Any insight into how patients, carers, family members and people want palliative care defined? Should it be just an academic exercise? Are we wasting time debating definitions when what’s important is the quality of care, or not, that people can access? How does a definition inform care, will it make accessing palliative care easier?
It’s a reasonable point Lynn. But my post does try to explain why the definition is important – particularly in parts of the world where palliative care is still ignored by governments and policy makers.
Can we define palliative care as “An approach to care, focusing on the illness experience of the patient rather than the disease itself; there by improving the quality of life of the patient, family and the community at large”
Addressing the disease experience leads to holistic care which recognise the patient as a person and contextualize the patient in the community. The essential feature of mainstream medicine is that it is disease focussed. This lead to unrelieved suffering and abandonment of the patient when the disease becomes incurable. In other words the concept of palliative care has corrected the methodological flaw in the mainstream medicine. Gradually we can dispense with the dichotomy of palliative medicine and curative/mainstream medicine. The real medicine is palliative medicine.
Well I like this definition.
Semantic’s has no place in helping people get the help they need when they need it.
End of life care needs to be understood too and not obfuscated by health professionals trying to be clever. Let’s face it lay people have enough trouble navigating the health system as it is.
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Dear professor Clark:
I have read your instigating text on the IAHPC’s proposal for a new definition for palliative care. In fact, this definition has some problems: the use, without a better conceptual precision of meaning of “holism”, a polissemantic term that harbors several medical rationalities; the issue of suffering and its consequences to decision making, also a flag of the euthanasia movement; the redundant use of the expression active care (is there any kind of health care that is not active?). However, the rub of the definition is contained in the term “severe illness”, a reshuffling of the equally problematic use of the term contained in the 2002 WHO definition “life-threatening illness”. What is a life-threatening illness? What is a severe illness? In the footnote to the IAHPC definition there is the inclusion of acute diseases in this definition, which seems quite adequate. In this sense, the definition you have elaborated regarding who is intended palliative care for, refers me the same question: what is “life-threatening condition”?
I think there is in the 2002 definition and in the IAHPC definition a strategy error insisting on the provision of palliative care for all life-threatening illnesses, without delimiting what are these illnesses. It remains to be seen whether it is appropriate for palliative care to be offered in severe acute life-threatening diseases. If this is feasible, and I think it is not, we will have to admit palliative interventions in all acute conditions that can lead to death, which seems to me a signal of a derailment of the hospice movement, but without the driver noticing it.
In these sense, I guess a good definition of palliative care is contained in The IAHPC Manual of Palliative Care, by Doyle and Woodruff, which is an apparent paradox, since IAHPC is proposing another definition: “Palliative care is the care of patients with active, progressive, far advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life.” 1 We could link this to the second part of your definition and we would have a broader, more robust definition.
Why the IAHPC seeks another definition, since its definition is so precise and so clear, is something that the backstage should clarify (somehow, your text already points in some directions). Does the IHAPC want a definition that goes beyond the compassionate care of the vast array of advanced and terminal chronic diseases? It seems so. I behold here a pendulous movement: at the beginning of the modern hospice movement one had nothing, or almost nothing; now, with the growing expansion of movement into health systems, everything is wanted. There will be a price in this direction, in my view a problematic and illusory direction.
As you already said: “ ‘`There is nothing more we can do’ has become ‘we must think of new possibilities of doing everything’ “. 2
Best regards,
Ciro A Floriani MD, PhD
Rio de Janeiro, Brazil.
1. Doyle, D; Woodruff, R. The IAHPC Manual do Palliative Care (3rd. edition), 2013). Available in https://hospicecare.com/what-we-do/publications/manual-of-palliative-care/
2. Clark D. ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Soc Sci Med 1999; (49):734.
Dear Dr Floriani, I am grateful for your deep thinking on this issue. Please allow me a little time to reflect on your points and perhaps get back to you. In the meantime you might want to take a look at this related piece, which appeared last week in the BMJ, but made no reference to my blog – https://www.bmj.com/content/364/bmj.l881 Kind regards David Clark