A new report has just appeared from the excellent Atlantes team at the University of Navarra in Spain. It sets out a detailed description of the development in Europe of palliative medicine as a field of specialisation. This is a challenging issue to study, in a context where modes of accreditation, licensing and associated procedural and legal structures can vary so much. But it is important work if we are to get a better understanding of how the specialty has developed to date and the issues it faces, going forward. In this post I set out the story of how specialty recognition for palliative medicine was first achieved and some of the developments that have ocurred since then. I conclude with some thoughts on the dilemmas faced by the nascent specialty as it seeks to establish its reputation within the medical establishment.
Specialisation in the United Kingdom and Ireland
In the United Kingdom of the 1980s, and building on the successes of the voluntary hospice movement, three factors came together to create a platform for the wider development of the emerging field of palliative medicine: a medical association was formed to support its practitioners; a scientific journal was established; and in due course, following extensive endeavours, formal recognition was given to palliative medicine as an area of specialisation. [i]
By 1985, plans were being developed in the UK for the creation of an association to represent the interests of physicians working in palliative care. Cicely Saunders wrote enthusiastically about it to Derek Doyle[ii] who together with Robert Twycross, working with Richard Hilllier made up a key group of early protagonists. All three were physicians working in hospices. Derek Doyle had been instrumental in establishing St Columba’s Hospice in Edinburgh, which opened in 1977 and where he was the first Medical Director. Robert Twycross had joined St Christopher’s as a medical Research Fellow in 1971 and in 1976 he was appointed Consultant Physician at the NHS hospice Sir Michael Sobell House, in Oxford. Richard Hillier was a former GP who had been drawn into hospice care in the 1970s and became the Medical Director of Countess Mountbatten House in Southampton, in 1977[iii]. Following some early discussion about whether the term ‘hospice’ should appear in the name, the group soon came to be known as the Association for Palliative Medicine for Great Britain and Ireland. The executive committee of the new association quickly became aware of a paper written by the then Deputy Chief Medical Officer for England, Gillian Ford, in which she outlined the potential for this new field of medicine to gain recognition as a specialty in its own right. Dr Ford was a key ally in the process. She had shared a flat with Cicely Saunders as medical students and also taken up a volunteer role providing medical cover at St Christopher’s Hospice at weekends.
Engaging the medical establishment
Discussions got underway with a number of key committees within the Royal Colleges, including the Intercollegiate Committee on Oncology and ideas were developed about how a training programme for the field could be put together. It proved that the most influential group in this regard was the Joint Committee on Higher Medical Training (JCHMT). At the time, a growing number of universities and medical schools were calling on those working in hospices to teach students about pain control and on communications issues, though as yet no formal curriculum on palliative medicine existed. Gillian Ford prepared a paper for the JCHMT and at the same time encouraged the chairman of the Specialty Advisory Committee in General Medicine and other senior medical colleagues to visit St Christopher’s for an appreciation of the work being done there. These senior medical colleagues found themselves impressed by the research of Robert Twycross on the actions of morphine and diamorphine[iv] and by Colin Murray Parkes’ evaluations of the impact of hospice care. [v] There was also considerable interest in the multi-disciplinary approach that was being adopted at the hospice and the way in which the efforts of the team were focussed on the ‘total pain’ of the patient, seen in a multi-factorial light. Yet there was still a sense up to the late 1970s and early 1980s that the constituent elements of what came to be called specialist palliative care, had not yet been teased out. This made for difficulties in devising a training programme for what at that time were known as the senior registrar years within medical training. It was also necessary to determine the specific prior experience that would be necessary for entry into the new field.
The outcome of these deliberations was enormously important for the history of palliative care in the UK and Ireland, and arguably much further afield too [vi]. In 1987 palliative medicine was established as a sub-specialty of general medicine, initially on a seven year ‘novitiate’, which once successfully concluded, led to the creation of a specialty in its own right. Indeed the specialty broke new ground in accepting as an appropriate qualification for entry membership of the Royal Colleges of Physicians, Radiology, and Anaesthetics; initially membership of the Royal College of General Practitioners was not a recognised mode of entry, though considerable protest and further campaigning led to its recognition within a few years.
The four year training programme in the UK was designed to equip doctors with skills to practice palliative medicine in any setting. It was heavily supported by Cancer Relief Macmillan Fund which provided pump-priming grants to set up new Senior Registrar Training Programmes. There were ten posts in the first wave of development[vii]. The training generally included at least two years within specialist palliative care teams such as hospice or hospital based, combined with a range of relevant training in chronic pain management, oncology, community services, or paediatric palliative care. Importantly, UK programmes also required competence in a range of essential management skills including recruiting and managing staff, and service development. In 2005 it was noted by Doyle that ‘In practise, most recruits into the specialty today have had several years’ experience in general medicine, oncology or radiotherapy, after gaining their higher qualification, but only a few have had experience of specialist palliative medicine as an SHO [Senior House Officer]. [viii] In 2007 Professor John Tooke’s inquiry into medical careers recommended that medical training should consist of 1) one foundation year (similar to house officer year), 2) three years of general training in a broad mix of specialties 3) followed by four to five years in higher specialist training. Progression through the three stages would require achievement of competencies and a rigorous selection process – and this was to become the new framework for those training in palliative medicine.
At the same time as the initial developments about the specialty were taking place in the 1980s, discussions were also underway about the creation of a journal to publish research, reviews and debate relating to the work of the new field. Following some discussion about its name and orientation, the first issue was published in 1987. It bore the title Palliative Medicine under which a ‘strap line’ appeared on the cover stating: a multi-professional journal. The wording was crucial and did a fair amount to antagonise colleagues in other professions, but the message was clear: medical practitioners had seized hold of the new field of caring for those with advanced disease at the end of life and over time, the medical model would exert a growing influence on thinking and practice. Enigmatically, the first issue contained a paper by Cicely Saunders entitled ‘What’s in a name?’[ix]
Developments in Ireland took a similar path. In 1989 the first post of consultant physician in palliative medicine was created in the form of a joint appointment between Our Lady’s Hospice and St. Vincent’s University Hospital, Dublin. Then in the mid 1990s, the Irish Medical Council considered the inclusion of palliative medicine in its list of recognised specialties. Such recognition required evidence of a significant corpus of knowledge specific to palliative medicine, over and above that which would be within the competence of any registered medical practitioner as well as the existence of a recognised body to oversee developments in the new specialty, including training and education. The Minister for Health and Children approved the inclusion of palliative medicine amongst the list of recognised Irish medical specialties in June 1995.[x]
Within an intensive period of activity lasting just a few years, both the UK and Ireland had succeeded in establishing the specialty of palliative medicine, with a training programme leading to consultant status. Arrangements for representing the interests of the field were now in place and an appropriate scientific journal had been established. Subsequently there would be considerable expansion in the palliative medicine workforce.
Europe and beyond
In 2007 Carlos Centeno and colleagues[xi] could report on a survey of palliative medicine specialization in the WHO European region, covering 52 countries. They found that palliative medicine had official certification in just seven European countries. In five countries beyond the UK and Ireland, palliative medicine had become a sub-specialty consisting in a second specialisation following certification in a full specialty: in Poland (1999), Romania (2000), Slovakia (2005), Germany (2006) and France (2007). In ten other countries – Czech Republic, Denmark, Norway, Sweden,Finland, Iceland, Spain, Malta, Israel and Latvia – there was evidence of discussion and actions in process relating to certification in palliative medicine. Elsewhere in Europe the evidence was less clear, but there was information to show at least postgraduate courses or university diplomas in: Italy, Lithuania, Portugal, Belgium, Bosnia and Herzegovina, Estonia, Georgia, Hungary and Luxembourg. The Nordic Specialist Course in Palliative Medicine, begun in 2001, and bringing together five countries in collaboration was a particularly sophisticated example of its type and a likely pre-cursor to specialty recognition [xii]
By 2010 around 18 countries worldwide had established palliative medicine as a specialty or sub-specialty. Within these there was considerable diversity in the procedures governing specialty status. Palliative medicine, whether described as a specialty or sub-specialty, did not constitute a uniform ‘currency’ of specialisation for the field. Health care systems differed significantly in their accreditation of medical practitioners and especially in their accreditation of specialist training, and this was reflected in the recognition of palliative medicine in different places. There were also resource implications affecting support for training, though these did not explain the wide variations in length of training that could be observed.
Estimate of countries with palliative medicine as a specialty or subspecialty in 2010
From: Clark, D (2010) International progress in creating palliative medicine as a specialized discipline. In G Hanks et al Oxford Textbook of Palliative Medicine, 4th edition. Oxford: Oxford University Press, pp 9-16.
In 2014 further details were available on the European context[xiii]. Centeno and colleagues reported that specialty recognition for palliative medicine had been obtained in 18 out of the 53 countries in the WHO European Region. The report described the main features of the specialisation process in each country and the date of certification. Eleven countries had now joined the list since the previous European study: Malta, Czech Republic, Finland, Georgia, Latvia, Norway, Israel, Italy, Hungary, Portugal and Denmark. Ten of the 18 countries had recognised the specialty, sub-specialty or field of competence status within the five previous years. A high level of heterogeneity in the training processes and programmes was again acknowledged.
Beyond the WHO European Region, there is no well documented assessment of countries with palliative medicine accreditation. At least one addition to the 2010 world list (above) is Lebanon (2013). Taking this into account, and the updated figures for WHO Europe from the Atlantes team:
My current estimate is that in 2014 there are at least 26 countries around the world that have now recognised some form of accreditation for the specialty or sub-specialty of palliative medicine.
I would be glad to hear of any further updates on this. The full list of countries of which I am aware is: Czech Republic, Denmark, Finland, France, Georgia, Germany, Hong Kong, Hungary, Israel, Ireland, Italy, Latvia, Lebanon, Malta, New Zealand, Norway, Phillipines, Poland, Portugal, Romania, Slovakia, Australia, Malaysia, Argentina, UK, USA.
Debates, variations and discontents about specialisation
There are however some major anomalies in how palliative medicine has gained recognition and accreditation. Derek Doyle has argued that the question of whether to seek specialty or sub-specialty status can only be decided at the country level, but notes that the only countries where palliative medicine has made much impact on professional education and clinical practice are those where physicians are working full time in the field, whether or not specialty recognition exists. [xiv] At the same time specialty recognition can be seen as a turning point in hospice and palliative care history.[xv] It has been noted that ‘the original heated debate that accompanied the development of palliative medicine as a medical specialty in the UK in 1987 has continued in all other countries where the effort has been made to develop the specialty’.[xvi]
For some, specialisation has been seen as the key to integration of palliative care into the mainstream health system and a major platform from which to develop an ‘evidence based’ model of practice that is crucial to long term viability. Others have appeared concerned about the emphasis upon physical symptoms at the expense of psychosocial and spiritual matters. There have been claims that forces of medicalisation and routinisation [xvii] are at work or even that the ‘holism’ of palliative care philosophy masks a new, more subtle form of surveillance of the dying and bereaved in modern society. [xviii]
Just a few years after specialist recognition in the UK, the St Christopher’s trained Irish palliative medicine physician Michael Kearney could raise concerns about a specialty narrowly bounded by the practice of ‘symptomatology’ and thereby failing to create the conditions for deeper, personal ‘healing’.[xix] In a later work he went on to emphasise the need for palliative medicine to draw upon Greek traditions associated with Askelepian healing and for these to be integrated with the modern science of symptom control. [xx]
Questions were raised by others about whether palliative medicine was really specialist territory, and not more properly the domain of the generalist. Why had there been so little discussion on why specialization in palliative medicine came about, whether it is the most appropriate way to address acknowledged deficiencies in care, and whether it could be sustained in the long term? Examining the factors that contributed to the evolution of palliative medicine as a specialty, was ‘its future is in doubt’?[xxvi] Definitional problems raised further concerns. A 2008 review by Pastrana and colleagues focussed on definitions of the term ‘palliative medicine’ and ‘palliative care’ in two languages, found a total of 37 English and 26 German versions, confirming ‘lack of a consistent meaning’[xxi] associated with the field.
It has been suggested that palliative medicine has the advantage of being a new and emerging speciality, relatively unencumbered by vested interests and capable of avoiding the mistakes sometimes made in other areas of medicine, in particular the risk of achieving a lot for a few, whilst the needs of the majority remain unmet.[xxii] For such an approach it is important that we have a worldwide perspective, accompanied by specific knowledge of local problems and issues and how they might be overcome. Careful thought also needs to be given to the contribution which specialization in palliative medicine can make to the global need for appropriate care of those with advanced disease and those facing death. The fate of palliative medicine is only one of the factors that will determine how dying people are cared for both now and in the future. Indeed, from the outset, specialisation in palliative medicine has had its problems and limitations.
By the early 21st century a growing commitment to the evidence-base was emerging in palliative medicine, though several reviewers found this still a rather fragile enterprise and made claims for the particular problems faced by palliative care in assessing its practice by such means. [xxiii] [xxxiv] Two forces for expansion were however clearly visible. First was the impetus to move palliative medicine further upstream in the disease progression, thereby seeking integration with curative and rehabilitation therapies and shifting the focus beyond terminal care and the final stages of life. Second was a growing interest in extending the benefits of palliative medicine to those with diseases other than cancer, in order to make ‘palliative care for all’ a reality.
Today the new specialty of palliative medicine is delicately poised. For some the integration it has achieved with the wider public health system – in at least 26 countries – is a sine qua non for its success; for others it has marked the entry into a new and potentially risky phase of development in which earlier ideals and goals for care might be compromised. One thing is clear – the new specialty will have to survive among a mass of others, and that will undoubtedly require good underpinning evidence, robust research and the creation of a critical mass of academic practitioners working with policy makers, health planners and the wider public to achieve some measure of consensus on what palliative medcine is and how it relates to global healthcare needs.
[i] The following section draws on oral history interviews conducted by the author with Dr Gillian Ford (6 June 1996) and Dr Derek Doyle (28 December 1995 and 13 February 1996).
[ii] Cicely Saunders to Derek Doyle, 15 October 1985. In: Clark D. (ed) Cicely Saunders. Founder of the hospice movement. Selected letters 1959-1999. Oxford: Oxford University Press, 2002: 262.
[iii] Clark, D Small, N Wright, M Winslow, M Hughes, N (2005) A Bit of Heaven for the Few? An oral history of the hospice movement in the United Kingdom. Lancaster: Observatory Publications.
[iv]Twycross R.G. Choice of strong analgesic in ternminal cancer: diamorphine or morphine? Pain 1977: 3: 93-104.
[v] Murray Parkes C. and Parkes J. Hospice versus hospital care – re-evaluation after ten years as seen by surviving spouses. Postgraduate Medical Journal 1979; 60: 120-24.
[vi] Hillier R. (1988) Palliative medicine, a new specialty. British Medical Journal 297: 874–5
[viii] Doyle D (2005) Palliative medicine: the first 18 years of a new sub-specialty of General Medicine. Journal of the Royal College of Physicians of Edinburgh 35: 199-205.
[ix] Saunders C. What’s in a name? Palliative Medicine, 1987 ; 1(1 ): 57-61.
[x] O’Brien T. and Clark D. A national plan for palliative care – the Irish experience. In Ling J. and O’Siorain L. (eds) Palliative Care in Ireland. Maidenhead: Open University Press, 2005:3-18.
[xi] Centeno, C Noguera, A Lynch, T Clark, D (2007) Official certification of doctors working in palliative medicine in Europe: data from an EAPC study in 52 countries. Palliative Medicine 21: 683-687.
[xii] http://www.dspam.suite.dk/nordicprogram2007-09.pdf, accessed 6 November 2007.
[xiv] Doyle D (1997) Palliative medicine training for physicians. Journal of Neurology 24 [Suppl 4]: S26-S29.
[xv] Fordham S, Dowrick C, May C (1998) Palliative medicine: is it really specialist territory? Journal of the Royal Society of Medicine 91: 568-572.
[xvi] Bruera E, Pace EA (2006) Palliative care versus palliative medicine. In Bruera E, Higginson I, Ripamonti C, von Gunten C, Textbook of palliative medicine. p64-67. Hodder Arnold, London.
[xvii] Hoy A (1999) Routinisation and medicalisation. European Journal of Palliative Care 6: 178.
[xviii] Clark D (1999) ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Social Science and Medicine 49: 727-736.
[xix] Kearney M (1992) Palliative medicine – just another specialty? Palliative Medicine 6: 39-46.
[xx] Kearney M. A place of healing. Working with suffering in living and dying. Oxford: Oxford University Press, 2000.
[xxvi] Fordham, S. Dowrick, C. May, C. (1998) Palliative medicine: is it really specialist territory? Journal of the Royal Society of Medicine. 91: 568-572.
[xxvi] Pastrana, Tet al (2008) A matter of definition – key elements identified in a discourse analysis of definitions of palliative care. Palliative Medicine 22: 222-232.
[xxii] Stjernsward, J Clark, D (2003) Palliative medicine – a global perspective. In Doyle D, Hanks GWC, Cherny N, Calman KC eds (2003) Oxford textbook of palliative medicine Third edn pp1199-1224. Oxford University Press, Oxford.
[xxiii] Higginson I. Evidence based palliative care. British Medical Journal 1999; 319: 462-463.
[xxiv] Keeley D. Rigorous assessment of palliative care revisited. Wisdom and compassion are needed when evidence is lacking. British Medical Journal 1999; 319: 1447-1448.