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|Year : 2003 | Volume
| Issue : 2 | Page : 40-46
Director, International Observatory on End of Life Care, Institute for Health Research Bowland Tower East Alexandra Square, Lancaster University Lancaster LA1 4YT, United Kingdom
Director, International Observatory on End of Life Care, Institute for Health Research Bowland Tower East Alexandra Square, Lancaster University Lancaster LA1 4YT
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Clark D. Editorial. Indian J Palliat Care 2003;9:40-6
Around the world more than 1 million people die each week. It is estimated that 60% of these could benefit from some form of palliative care. Yet at the moment only a tiny minority of dying people ever receive the support of hospice and palliative care services; and unrelieved suffering persists on a comprehensive scale. Palliative care is hugely underdeveloped in most resource poor countries, and it is still significantly constrained even in many countries with otherwise 'advanced' health care systems. At the same time there is a significant shortage of political leaders and 'product champions' with an interest in palliative care and we lack national and international polices to promote its development. The creation of a trained multi-disciplinary workforce to deliver clinical care, educational programmes to support them, and an evidence base to highlight both unmet need and the efficacy of existing provision are all additional challenges. Now more than ever, it is a time for new thinking and policies to promote palliative care development where it is most needed.
The rise of hospice and palliative care in its distinctly modern guise (combining clinical care, education and research) is generally traced to the late 1950s and early 1960s when there is evidence in many countries of a new interest in the improvement of care for dying people. In the wake of developments at the local level and as hospice and palliative care services began to establish in individual settings, there quickly emerged a range of international associations concerned to promote and develop the work of hospice-palliative care, along with the cognate field of pain medicine. These organisations focused on professional development, education and training; on clinical innovation and research; on lobbying and advocacy. The final chapter in the new, third edition, of the Oxford Textbook of Palliative Medicine contains a timeline and commentary on the these international organisations and initiatives. Yet, with a few exceptions, [3, 4] the published literature provides little comparative analysis of hospice and palliative care developments in different regions of the world, though the Oxford Textbook chapter summarises a considerable body of material on individual country initiatives.
It is estimated that hospice or palliative care services now exist, or are under development, on every continent of the world - in around 100 countries. The total number of hospice or palliative care initiatives is in excess of 8,000 and these include inpatient units, hospital-based services, community-based teams, day care centres and other modes of delivery. There is much to celebrate about these achievements, and we know that in many cases the developments have been hard won and have required enormous effort for their realisation. But there is also much still to be done. One element in the struggle is the production of better information about what already exists, how provision varies from place to place, as well as a careful analysis of some of the factors that promote or impede successful development.
Since the beginning of the 1990s, together with many colleagues in the UK and elsewhere, I have developed some wide-ranging research interests in palliative care, including policy analysis and needs assessment, service evaluation, historical investigation, and also ethical and cultural reflection. Building on these perspectives, it has now proved possible to establish a wider programme of activity focussing on the collation and analysis of comparative information relating to hospice-palliative care around the world: past, present and future. Since September 2003 the International Observatory on End of Life Care has been established at Lancaster University within the Institute for Health Research. The Observatory works in partnership with colleagues and organisations in many parts of the world. It seeks to generate data from original studies, to collate material gathered elsewhere, and above all to turn this into useful intelligence that can influence policy and service development. In addition to the Observatory's project-based research and development programme, it also houses extensive digital and paper archives relating to various aspects of the history of modern hospice and palliative care. In the short time since its establishment it has already obtained support from key organisations and individuals and has brought together a global network of collaborators and partners. Full details of this work can be found at: www.eolc-observatory. net.
The idea for such an 'Observatory' builds on examples of existing successful social science, cultural and public health observatories, but is unique in being focussed on end of life care and in its mission to go beyond the epidemiological frame of reference. It will therefore provide data on key structural issues facing the development of palliative care, country by country, including: health care system and reimbursement issues; opioid availability; education, training and workforce development; audit and evaluation; partnerships and international collaboration. Additionally, it will contain country-based material on relevant cultural and ethnographic issues, as well as material relating to end of life care ethics. The Observatory website will make available this information for each country, and will be configured for searches of specific topics and issues across countries. It will also have links to other important websites. In addition to its own website, the Observatory will disseminate information through the print media of books, journals and reports. To assist in this, the Observatory has already established its own non-profit publishing enterprise, named Mortal Press; the first publication from Mortal Press, a set of essays by Cicely Saunders, appeared at the end of 2003. Regular updates about work in progress at the Observatory are also appearing in every issue of the journal Progress in Palliative Care, in a column entitled 'View from the Observatory'. When logging on the the Observatory website, a 'tickertape' on the home page gives headline details of the most recent additions to the site.
So what does the International Observatory on End of Life Care seek to achieve? Still in its infancy, the aims of the Observatory continue to evolve and to be refined, but they can currently be classified as follows:
- To provide accessible research-based information on hospice and palliative care provision in the international context, incorporating demographic, epidemiological and health care systems analysis as well as ethnographic, historical and ethical perspectives.
- To disseminate this information through the Observatory website and through published articles, monographs, reports, CDs and other media, in ways which facilitate cross-national comparative analysis and stimulate practical development.
- To undertake primary research studies and reviews to generate such information.
- To develop a small grants programme to support academic work relating to the aims of the Observatory in resource poor regions.
- To work in partnership with key organisations and individuals, nationally and internationally, in order to foster a sense of inclusion and participation in the work of the Observatory.
The International Observatory on End of Life Care is seeking active and sustainable partnerships with organisations and individuals committed to the global development of palliative care. It has a growing network of collaborators across several countries and continents and already has key links in India and South America, as well as Eastern Europe, Central Asia and Africa. It already has close ties with the Indian Journal of Palliative Care. Here are some of the underlying preoccupations that will guide the work of the Observatory as it seeks to review the current development of palliative care around the world.
| Cultural sensitivity|| |
There is a welcome and growing interest in the question of developing services which are sensitive to the cultural context of those they serve. The Calicut Declaration of 1997 reflects this in its determination to devise 'Asian solutions to Asian problems'. A volume from Hong Kong shows this vividly in documenting the rise of psycho-oncology and palliative care on the island. A project in China highlights some of the issues which occur when western palliative care models encounter cultural systems from the east. There is increasing sophistication in the understanding of issues of language, gender, power and oppression when configuring the work of palliative care. Some striking examples can be found in the literature. A review of palliative care work with 'marginalised communities' in Australia describes those disadvantaged within palliative care, because they do not have a diagnosis of cancer, but in particular draws attention to those marginalised by imprisonment, by geography, and by culture. In work with aboriginal peoples, the concept of 'cultural safety' has become a guiding principle which attends to: beliefs about illness, dying and death; folk and popular healthcare practices; language and cultural practices (rituals, ceremonies, spirituality); and social organisation (families, kin, communities). A project of the Central Australian Palliative Care Service involved commissioning a series of paintings by aboriginal artists about palliative care in the local context; the paintings were found to create new understanding and served as a vehicle for referral and a tool for education. Such approaches merit wider exposure and can contribute to an evolving methodology whereby palliative care becomes more attuned to its cultural context. Improved understanding of the place of death and bereavement within the major religious traditions is a further aspect of this. There is also a great need to consider the provision of palliative care to those disadvantaged in multiple ways. This includes homeless people, those in prisons and other institutions, and those in poverty. It also involves those with learning disabilities as well as those dying of AIDS, or of infectious diseases such as malaria, rabies, tuberculosis and other conditions - many of them eminently curable where the resources are available.
| Policy awareness|| |
Sustainable development in palliative care is dependent on integration within the prevailing policy framework, in particular the framework of reimbursement. In this respect, palliative care activists have had a great deal to do in lobbying and convincing policy makers. One commentator observes: 'The resources for, and legitimation of, high-quality end-of-life care will depend on broader support than that which emerges piece by piece, or institution by institution, as a result of local initiatives'. Policies relating to opioids are perhaps the most obvious barrier to the development of palliative care in many countries of the world. Here the guiding principle of 'balance' must be observed: allowing adequate availability of narcotics for medical purposes, whilst controlling illegal use; 'diversion' from the former to the latter is an important inhibitor to the easier availability of opioids for medical purposes. Particularly in Asia, the long history of addiction associated with the widespread use of opium - itself the product of British 19th century foreign policy - continues to cast a shadow over easier medical availability.
In general it is cost which restricts the availability of new drugs to the poorer regions of the world; but this does not apply to the availability of immediate release morphine, where costs are generally low. Here it is usually regulatory and educational barriers that are at work. Opioids alone are not the solution to the wider availability of palliative care, but they are an important marker of progress and the current variations in levels of availability and consumption are a major outstanding concern at the policy level. Beyond the regulatory field however, lie the attitudinal and cultural barriers, reported from many countries; found among patients, families and professional care givers, they militate against the use of strong opioids in numerous settings. Improving opioid availability and access to the technologies of pain relief for those at the end of life therefore requires multiple strategies if the goal of freedom from pain for the world's dying people is to be achieved.
| Ethical maturity|| |
It is increasingly apparent that the ethics of the rich western world, in which modern palliative care originated, cannot form the ethical code for all peoples and settings. Three authors from Malaysia make the important observation that '...decision making in palliative care in this part of the world is far removed from the ideals of autonomy, informed consent and individualism described in the classic textbooks on medical ethics'. In a fascinating editorial written in 1999, the world's first professor of palliative medicine drew a parallel between human mortality and the fragile existence of planet earth itself, a world beset with global problems of poverty, pollution, war and disease: 'Palliative care offers an example of what can be won from a desperate situation of impending demise; it acknowledges a hope founded in love and courage and patience rather than desperate survival, and so it proclaims a still, small message for a terminal world'. To this can be added the observation that: 'it is better to have poorer and older technologies that are available to all, than more recent technologies that must be rationed. A fair and general allocation of healthcare resources, even with less than up-to-date technologies, is better than a system creating a massive technological gap between rich and poor'.
What can be done? It is imperative that palliative care leaders in the rich world give greater attention to supporting their colleagues in the resource poor regions of the world. Indeed, with the advent of the global pandemic of HIV/AIDS, this agenda has become larger and far more complex than any could have been imagined even a few decades ago. Over the last thirty years, there has been an extended period of international hospice and palliative care development, fuelled by charismatic leadership, individual motivation and commitment, as well as rich and spontaneous networks of support and assistance across countries and continents. This has been vital to the successes so far achieved. But we are still far from achieving the goal of palliative care for all who require it. The task is enormous, the resources are few. Yet at the same time, there is a new level of interest in such matters in many parts of the world and evidence of greater willingness to work together. New alliances are forming, new ideas are coming into play, new talents and skills are being harnessed to the task. Together this could add up to cloak of palliative care to shelter all the world's dying. An ambitious goal indeed - but certainly one worth striving for.
| References|| |
|1.||Clark, D. Between hope and acceptance: the medicalisation of dying. British Medical Journal, 2002;324:905-7. |
|2.||Stjernswärd J, Clark D Palliative medicine: a global perspective. In D Doyle, GWC Hanks N Cherny, KC Calman (eds) Oxford Textbook of Palliative Medicine Third edn. Oxford: Oxford University Press, 2003. |
|3.||Saunders C, Kastenbaum R, eds. Hospice Care on the International Scene. New York: Springer, 1997. |
|4.||ten Have H, Clark D. The Ethics of Palliative Care: European Perspectives. Buckingham, Open University Press, 2002. |
|6.||Saunders, S Watch with Me. Inspiration for a life in hospice care. Sheffield: Mortal Press, 2003. |
|7.||Clark, D Wright, M Bath, P Gatrell, A (2003) The International Observatory on End of Life Care: a new research and development initiative in end of life care. Progress in Palliative Care 11(3):136-138; Wright, M Clark, D (2003) A new research initiative in Africa Progress in Palliative Care 11(4):191-92. |
|8.||Kumar S. The Calicut Declaration, November 1997. European Journal of Palliative Care, 1998:5(3):78. |
|9.||Fielding R, Chan CL-W. Psychosocial oncology and palliative care in Hong Kong. Hong Kong: Hong Kong University Press, 2001. |
|10.||Ross MM, Dunning J, Edwards N. Palliative care in China: facilitating the process of development. Journal of Palliative Care, 2001;17(4):281-7. |
|11.||Prior D. Palliative care in marginalised communities. Progress in Palliative Care, 1999;7(3):109-15. |
|12.||Fried O. Many ways of caring: reaching out to aboriginal palliative care clients in Central Australia. Progress in Palliative Care, 1999;7(3):116-9. |
|13.||Morgan JD, Laungani, P, eds. Death and Bereavement Around the World. Volume 1: Major Religious Traditions. Amityville, NY: Baywood, 2002. |
|14.||Barnard D. Introduction; International Policy Report. Journal of Palliative Medicine, 2001;4(3):395. The papers presented in this section of the Journal of Palliative Medicine are an important source of material relevant to my concerns here. |
|15.||Maddocks I. How can opioid drugs be more widely and safely available? Progress in Palliative Care, 2000;8(3):125. |
|16.||Barnard D. Introduction; International Policy Report. Journal of Palliative Medicine, 2001;4(2):227. |
|17.||Mystakidou K, Liossi C, Fragiadakis K, Georgaki S, Papadimitriou J. What do Greek physicians know about managing cancer pain? Journal of Cancer Education. 1998;13:39-42. [PUBMED] [FULLTEXT]|
|18.||Ng LF, Shumacher A, Goh CB. Autonomy for whom? A perspective from the Orient. Palliative Medicine, 2000;14:163-4. [PUBMED] [FULLTEXT]|
|19.||Maddocks, I (1999) Connecting with a terminally-ill world. Progress in Palliative Care, 7(4):169-70. |
|20.||Callahan D. Justice, biomedical progress and palliative care. Progress in Palliative Care, 2000;8(1):3-4. |
|21.||Clark, D (2003) A Cloak around the World. Report of the seminar of national associations for hospice/palliative care held in the Hague, 30 March - 1 April 2003. London: Help the Hospices. |