Archives
Editorial
Advances in Contemporary Palliative and Supportive Care
Carol Tishelman
Professor of Nursing, Karolinska Institute, Sjukhem Foundation; Dept of Learning, Informatics, Mgmt & Ethics, Karolinska Institute, Stockholm, Sweden; School of Nursing, Midwifery & Social Work, University of Manchester, United Kingdom
Abstract
As we begin to near the end of this first decade of the new century, there is cause to reflect on the future of palliative and supportive care. The dramatic reforms in end-of-life care of the last half of the 20th century have been widely acclaimed and documented in a variety of publications, with the International Observatory on End-of-Life Care playing an important role in this process http://www.eolc-observatory.net/.
St Christopher’s Hospice, generally acknowledged as the first of the ‘modern’ hospices, was founded by Dame Cicely Saunders only 40 years ago. It is impressive that despite this relatively short time span, designated hospice and palliative care facilities are now found throughout the world (Centeno et al, 2007, Clark and Centeno, 2006, Wright et al, 2006, Clark et al, 2003).
Australia was relatively early in acknowledging the importance of these new ideas in practice, with the first modern hospices established in the early 1970s, and community-based palliative care instituted in 1981. Today’s hospice and palliative care services vary greatly by country, region and authority responsible, with different degrees of resemblance to Cicely Saunder’s original intentions of integrating high quality clinical care for the dying with education and research.
But the widespread acceptance of the hospice and palliative care movement in only a few decades is indeed remarkable, although it remains clear that existing resources are far from adequate to meet present needs for palliative and supportive care. It should also be recognized that lack of knowledge and negative attitudes - especially with regard to opiate use - still inhibit use of those resources that are available.
Keywords
nursing, palliative care, supportive care, end-of-life care
Article Text
As editors of this special issue of Contemporary Nurse, we would like to critically reflect upon the future of hospice and palliative care movements from a stance of respect and admiration for all that has been accomplished to date. Through our long experiences in nursing, as clinicians, researchers and educators, we are well aware that the early stages of disciplinary development are often associated with defensiveness; this has perhaps also been the case with end-of-life scholarship. It is our belief that this field has now matured to the point of being able to foster a more critical dialogue.
We believe that one hinder for precise and critical communication is the lack of consistent terminology used to refer to supportive, palliative and end-of-life care (Cherny, 2006). In many settings, these terms refer to different, although overlapping areas, with palliative care referring to a form of care provided towards the end-of-life, characterized by 'active, total care', as described in the original 1990 WHO definition http://64.85.16.230/educate/content/elements/whodefinition.html.
In contrast, supportive care often represents a more over-arching term, with broader implications from active treatment throughout the disease trajectory. These already unclear distinctions have become perhaps even more confused in recent years. For example, the prominent US National Cancer Institute is notable in that they define the terms ‘palliative care’ and ‘supportive care’ identically, as aiming 'to prevent or treat as early as possible the symptoms of the disease, side effects caused by treatment of the disease, and psychological, social, and spiritual problems related to the disease or its treatment' http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=46609. These NCI definitions have much in common with WHO’s position statement from 2002, in which the WHO describes palliative care as 'an approach' http://www.who.int/cancer/palliative/definition/en/, rather than a form for organized care provision. While many may feel we focus unduly on semantics, we believe that the terminology used does have implications for how we conceptualize, organize and provide care.
These and other issues are addressed in a recent, provocative book by Randall and Downie (Randall and Downie, 2006), in which they critically discuss many of the challenges, contradictions and tensions facing palliative care today and in the future, from their perspectives as actors within the field. They build their discussion of the strengths and weaknesses of palliative care as practiced today around the dissonance that can be found in modern palliative care between two historical traditions of health care - the Hippocratic tradition of rational, scientific medicine focusing on disease and its’ cure, and the Asklepian tradition of fostering relief of suffering, healing from within, and acceptance of mortality. They mean that friction between these traditions can be found in many aspects of palliative care practice and research today.
Randall and Downie (Randall and Downie, 2006) begin by arguing that Hippocratic medicine has 'joined forces' with consumerism and 'together they have successfully colonized palliative medicine' (p 19). They then raise a number of paradoxes which they believe result from this collusion. One such paradox relates to the tension Randall and Downie feel exists between listening to patients and using structured tools for assessment which are based on professional values and assumptions. Other paradoxes which Randall and Downie address include the 'considerable paternalism' found in palliative care despite the rhetoric emphasizing patient-centredness and choice. They not only question the normative role of the health care professional, but also question the increasing inclusion of family members as part of the professional remit.
Another focus for Randall and Downie’s critical gaze is the above-mentioned WHO definition of palliative care (World Health Organization, 2002), which they view as an expression of the attitudes and philosophy which direct the practice of palliative care today. Among other things, they argue that the breadth and reach suggested for palliative care by the WHO is not consonant with the idea that palliative care is a specialty unto itself. They also argue the idea that palliative care be given in conjunction with curative care to be 'logically impossible' (p. 20). In addition, Randall and Downie point to what they feel are idiosyncrasies in how palliative care both defines itself as a branch of health care, while adopting different practices in regard to the ethos of health care. They analyse contradictions in WHO’s statement that palliative care 'intends neither to hasten nor to prolong death', pointing out that it is 'dying' rather than 'death' that is intended, and that patient-centredness and self-determination do not always mesh with the adamant anti-euthanasia philosophy that permeates palliative care.
Randall and Downie conclude their analysis with a new statement of what they believe to be a more realistic philosophy for palliative care, one which focuses on care of patients with incurable diseases and a limited life span. They argue that symptom alleviation, rather than improved quality of life, is the primary goal for such care, which can best be delivered by professionals who both ascertain and sensitively provide the degree of information desired by the patient, who listen to patients’ own goals and values and discuss treatments in terms of their differential impact and benefit for the individual. According to Randall and Downie, this means that professional advice is based on experience, and is given to relatives only within the constraints determined by patient confidentiality.
Regardless of our individual views of either Randall and Downie’s analysis or their suggestions for the future, as editors and as researchers within the field of palliative care we applaud this work as one indication of the coming-of-age of palliative care scholarship. Randall and Downie raise tensions and existing conflicts within palliative care to the level of sophisticated, but accessible discourse, and give us opportunity to reflect over both our heritage and our collective future.
And indeed, there is much to reflect over, and much to discuss and debate. The challenges for the future are no longer to argue the need for adequate palliative and end-of-life care in comparison to standard hospital care or limited care, but rather to better respond to questions such as what is adequate, what is optimal, what is feasible, what is warranted and what is ethical in a wide variety of different situations. We also need to consider new alternatives for providing quality palliative and supportive care in health care systems with disparate, but always limited, resources. Tensions between empirically-generated evidence and experiential knowledge need to be dealt with - what forms of knowledge should be acknowledged as relevant in palliative and end-of-life care? How can they complement one another? And when do they clash? And how can we evaluate the effects of our actions and our interventions as professional caregivers as effectively and as unobtrusively as possible?
There is also tension between defining palliative care as the territory of specialists versus generalists - in what situations and for which patients should palliative care be an option? What risks arise as palliative care is increasingly incorporated into mainstream health care with its associated technologies? What benefits are there in increased integration? Which gains and losses colour professional attitudes and which impact on patients? These are not questions with ready answers.
As a collective, we need to continue to tease apart and explicitly formulate many underlying issues of relevance for the future of supportive, palliative, and end-of-life care in our changing world. We have much to gain by open discussion, debate and by fostering critical inquisitiveness in an area that has often been held back by complacency about what we managed to do well, rather than by questioning what we could do better.
This special issue contains a host of papers with an initial curiosity about some aspect of end-of-life or palliative care as their common denominator. We hope that they can contribute to our understanding of the present in palliative and supportive care nursing, and help us raise questions about its future.
References
Centeno C, Clark D, Lynch T, Rocafort J, Flores LA, Greenwood A, Brasch S, Praill D, Giordiano A and de Lima L (2007) EAPC Atlas of Palliative Care in Europe, EAPC/IAHPC Press, Milan, Italy.
Cherny NI (2006) In Catane R, Cherny NI, Kloke M, Tanneberger S and Schrijvers D (eds) European Society for Medical Oncology Handbook of Advanced Cancer Care, Taylor and Francis, London, pp. 11-16.
Clark D and Centeno C (2006) Clinical Medicine, Journal of the Royal College of Physicians 6: 197-201.
Clark D, Wright M with, Luczak J with, aia, Fürst C-J and Sauter S (2003) Transitions in End of Life Care. Hospice and related developments in Eastern Europe and Central Asia, Open University Press, Philadelphia.
Randall F and Downie RS (2006) The Philosophy of Palliative Care. Critique and Reconstruction, Oxford University Press, Oxford.
World Health Organization (2002) National Cancer control programes: policies and managerial guidelines, WHO, Geneva.
Wright M, Wood J, Lynch T and Clark D (2006) International Observatory on End of Life Care, Lancaster, UK, pp.52.
eContent Home